Angels 4 Taegan

Pampered Chef ~Angels 4 Taegan Fundraiser~

2010-04-21T15:41:00.000-05:00

Become an Angel for Taegan. Pampered Chef and Angels4Taegan combine forces to help raise money for 5 year old Taegan McFarland's medical fund.

This is a Pampered Chef "Catalogue Show" Fundraiser. A percentage of the total fundraiser sales will be donated by Pampered Chef directly to Angels 4 Taegan.

May is Pampered Chef's "Help Whip Caner" month and features some special products that are not available any other time of the year! Any guest whose purchase is $60 or more (before tax and shipping) will receive two reusable "Help Whip Cancer" shopping bags for free! All guests who spend $100 or more will be entered in a drawing for a Family-Size Quick Stir Pitcher. Orders will be placed on May 7th and can be shipped to Michelle McFarland (if you are local to her), or shipped directly to you.

If you would like to support Angels 4 Taegan, you can visit http://www.pamperedchef.biz/rachaelo and click "Our Products." Then Click “How to Purchase.” Enter “Angels 4 Taegan” as the host and you will be directed to a page where you can view the entire catalog and place your order online. You will be able to order on the website until May 7th at 9:00 a.m. You may also place a “paper” order with Taegan's family! Please note, if you use a credit card to purchase your items, your credit card will not be charged until the show closes on May 7th.

You may purchase today through 9am May 7,2010. If you have any questions, please feel free to contact Michelle at angels4taegan@yahoo.com

Thank you for supporting Taegan!
www.angels4taegan.com

On-line Music Benefit for Taegan

2009-12-16T13:07:00.001-05:00

Today is Angels 4 Taegan day as part of the Music for Winter Festivals concert series in Second Life. Please come and share some live music with JaNa KYoMooN (Jan Pulsford) at Mystical One's Mystical Healing Park at 7PM Eastern Standard Time. Taegan is a beautiful 5yr old girl who is dealing with a variety of disabilities. We hope you will become an Angel for her by raising money to help Taegan receive life altering medical treatments.

So grab an avatar and head into the exciting virtual world of Second Life. Join us by copying this url into your web browser:
http://slurl.com/secondlife/Spring%City/170/66/25/25

4PM PST/ 6PM CT /7PM EST /12AM UK /1AM EURO

Another Year Comes To An End.. and What Have We Learned?

2009-12-11T00:26:00.004-05:00

So, I haven't done the best at blogging in 2009. Perhaps not much happened that was blog-worthy... or perhaps life just left little time to blog. Ahhh, whichever the case may be, I'll make a resolution for 2010 to be a more timely blogger. :-)

Not much happened in the way of fundraising in 2009. We weren't able to have the 3rd Annual Angels Ridin'4 Taegan motorcycle ride benefit this summer. I wasn't able to get everything organized and put together by myself in the limited time I had to prepare. I scrambled to find volunteers to help, but resources were limited, and no volunteers were to be found. It was disheartening, to say the least. This year, hopefully if I begin organizing in early spring, I can get something put together by end of summer. The biggest hurdle I've encountered is finding a place for all the motorcycles to meet/register. I was turned away by countless churches due to insurance reasons. If anyone knows of a place where 100 or so motorcycles can gather for Taegan's ride, please contact me. ( angels4taegan@yahoo.com )

The motorcycle ride is the event we count on most each year to bring the bulk of the funds in for Taegan's medical fund. Needless to say, we weren't able to provide her with anymore hyperbaric oxygen therapy treatments in 2009. Without the HBOT, physically she has had a rough year and a half. She's had 2 rounds of botox injections followed by serial casting in the past year. Serial casting lasts between 6-8 weeks, depending on the spasticity of her leg muscles. Next Friday I will take her to the surgery center again, where she will undergo another series of botox injections. Hopefully she will not have to be sedated for this series. When she was receiving regular HBOT, she did not need botox injections to manage her muscle tone. She has had to have botox injections every 3-6 months to manage spasticity. It's frustrating to see a treatment as natural as hyperbaric oxygen not being utilized to treat cerebral palsy, when it's so blatantly obvious that it WORKS! So many things in our government are corrupt... don't even get me started.

Progress has been quite slow in the last year. Often with Taegan it is two steps forward, one step back. And sometimes, it's two or three steps back, in her case. She continues to regress in gross motor skills during periods of illness. She is currently being tested for possible mitochondrial disease, which is one possible explanation for this phenomenon. Taegan had some preliminary blood work done, and all the tests came back negative, thankfully. As I understand it, the next step is for a muscle biopsy to be done. I'm not sure if I want to put her through such invasive testing or not. It's quite a large chunk of muscle they would remove from her thigh. The treatment for mitochondrial disease is management with supplementation with things such as COQ10 and carnitine. I've already got her on so many supplements, why not add in some others that are known to help with mitochondrial disease as well?

Taegan started kindergarten this year in a special needs self-contained classroom. I think she enjoys school pretty well. It's hard to know really, as she cannot communicate about her day etc. It has been quite an adjustment for her though, as they do not offer PM kindergarten to the special needs students. So, she has had a rude awakening this school year, having to wake up at 7:30am 5 days a week. She's still adjusting, but doing better with the new schedule, overall. I do know she absolutely LOVES to ride the bus.

Taegan continues to have PT, OT and Speech at school, as well as privately throughout the week. She also has hippotherapy, music therapy and cranial sacral therapy weekly as well.

In September, Taegan began music therapy with a wonderful music therapist named Christine Barton. To anyone looking for a good music therapist in the Indy area, Chris is worth her weight in gold!!! Taegan absolutely loves her and asks at least 50 times a week, if not more, "Chris? Music? Chris!! Guitar? Piano? Chris???" We have a 'countdown to Chris' just as we do for "horsey Monday." Ha ha ha! It really does fill my heart with joy to see her so excited about music and horses. It's the little things... right?

Christine Barton's website link below:
http://www.christinebarton.net

I'm still treating Taegan holistically to manage the symptoms of autism. She's been on the Yasko protocol for nearly 2 years now. It's the best decision I've made in regards to managing it and helping her to live a more functional life. The Yasko protocol focuses on the methylation pathway in the body, as it relates to your body being able to utilize nutrition properly. It's based on genetics and specific mutations in the pathway of each individual. To learn more about the Yasko program, click the link below:
http://www.holistichealth.com/#/dr-amy

This summer I took Taegan to Nashville, TN to see a highly recommended and respected homeopath named Carole Krones. She did an amazing assessment of Taegan and put her on a remedy that has helped calm and focus Taegan quite a bit. I think working with a homeopath complements the Yasko protocol immensely.
http://www.homeopathytennessee.com/

Whilst in Nashville, Taegan was able to meet up with one of her very special earth angels...Jan Pulsford. We had a nice lunch with Jan and her son. Jan is a dear friend, as well as a veteran musician. Since 2006, she has performed several live shows on Taegan's behalf, with all proceeds benefiting the Angels 4 Taegan fund.
http://janpulsford.blogspot.com

And for those of you who'd like some cool tunes to help get you through your day, Jan has her music streaming 24/7 at the url listed below:
http://musicallmusic.com/radiojana/

As Taegan celebrated her 5th birthday this year, it was difficult not to recognize the obvious gap in social development between her and her peers. I'd be lying if I said it gets easier to deal with each day, week, month, or even year. I opted out of having a traditional birthday party for her this year. Hopefully next June she'll be able to experience the joy and excitement of having friends and family gathered together for a party in her honor.

My wish for her in 2010 is that she will be able to experience the magic and joy of childhood.... that she will be able to use her imagination and dream magnificent dreams... and on a selfish note, I'd love for her to be able to share her dreams with me.

So Santa, if you're reading this - I'm pretty sure my name isn't on the naughty list. When you slide down our chimney on Christmas Eve, please leave some imagination seeds and dream dust. :-)

Winter Update

2008-12-09T02:43:00.002-05:00

And now.. an overdue update!

The 2nd Annual Angels Ridin' 4 Taegan motorcycle ride was another great success, despite hurricane Ike threatening to put a damper on the event. It was wonderful to see so many familiar faces at this years ride. Taegan had so much fun this year!!! She was able to lead the riders to the first stop and then joined in the festivities on the last stop of her ride. Many of you commented on how much healthier she seemed this year compared to last year. HBOT is one of the therapies we have to credit for Taegan's improved health. Boosting the immune system is one of the many benefits HBOT provides. We're hopeful that Taegan can receive another 40 hours of HBOT this spring.

Hopefully, I'll be able to start planning another benefit for Taegan soon. I'm hoping to resume plans for the spaghetti dinner benefit that we'd originally planned for last spring. My grandmother, who was very ill last spring, is doing much better these days. I'm so thankful, and count my blessings every day for her miraculous turnaround.

While we are overjoyed with the improved health of my grandmother, we are deeply saddened with the recent loss of Taegan's grandmother, Shawn's beloved mother. Sadly, on November 13th 2008, she lost her 2 1/2 year battle with ovarian cancer. While we are grateful for the many ways she has blessed and enriched our lives, it's still difficult going through each day with the realization that she is no longer with us to share in the joys and hardships we all face. The holidays are going to be difficult, probably for a good while to come. I try to take solace in knowing that she is no longer in pain, and that she still remains with us in our hearts.

On October 24th, Taegan was formally diagnosed with Autism by Riley Children's Hospital here in Indianapolis. I've known in my heart for quite a while that she was autistic, but seeing it written on paper makes it somehow, more ... real? The official report came in the mail last week. Just reading through it made my heart ache, not only for Taegan, but for all of us. It seems that God wanted to make Taegan especially special - LOL

This is a journey of learning - Taegan is teaching everyone she comes into contact with - but perhaps I'm the most difficult student she'll encounter. Or perhaps I have the most to learn? Whichever the case, I know the road is long, and it's a path less traveled for sure, but we're walking hand in hand... and I have faith that we'll end up in the destination that was intended for us in this life.

I've come to realize recently that I've never really grieved for the challenges Taegan faces, or the ones I have faced with her. I'm not sure that 'grieved' is the accurate term, because I celebrate her life and the joy she brings every day. I haven't taken the time to reflect back on all of the things we've gone through since her premature birth. It's really been quite a whirlwind. It never stops. There's never been a time of reprieve before the next onslaught of issues/diagnoses manifest. Sometimes I find myself wondering, when will it end? How much is going to be enough? Do I really want an answer to that question? I just keep pushing ahead, trudging forward, researching and problem solving for the issues she faces in my spare minutes. If I stop to think about her challenges - my hopes and dreams for her - and how they inevitably will be altered, I'm afraid the tears might never stop.

So instead, I choose to stop and reflect on the challenges she's overcome thus far, and the remarkable progress she's made in 2 years. We began this website and the fundraising efforts 9/11/06. In that time, we've been able to provide Taegan with a life altering therapy called HBOT! Because of the kindness of our friends, family and complete strangers, Taegan has been able to receive 120 hours of hyperbaric oxygen therapy! Her tight muscle tone continued to decrease again with her last round of HBOT - she still has to undergo serial casting occasionally, especially after growth spurts, as well as Botox injections to help manage some tightness in her left hamstring and calf. Her muscle tone on her right side is so much better now, she has started to train in a smaller brace called an SMO. This is excellent news!!! The AFO's that she's always had provided support for her knee as well as her ankle and foot. An SMO provides support only for the ankle and foot. Our goal is to progress Taegan to an SMO on her left leg as well. I know we'll get there!

She continues to LOVE hippotherapy (therapy on horseback) each week. She often asks "Horsies?" or "Horsey Monday?" She knows that Monday is hippotherapy day. It fills my heart with joy to watch her smile and clap her hands while she's riding the horses.

Her weekly cranialsacral sessions with Mary are going wonderfully. She's having some great releases and is more calm and able to relax afterwards. It seems to be carrying over for longer periods of time. Sometimes I think it works too well, as often times it's a struggle to keep her awake on the car ride back home! Sleep for Taegan continues to be one of her biggest nemeses. It's hit or miss with her as far as a consistent sleep schedule. Some weeks she is sleeping 3 hours a night, and others she'll sleep up to 6. She saw a developmental pediatrician at Riley during the Autism evaluation. He wished me "good luck" with the sleep issues, as he said it appeared I had tried everything he would recommend to achieve a more consistent pattern. The Dr. explained that with PVL as well as with Autism, the sleep centers of the brain are often affected. I should be so lucky! :-)

Taegan is doing very well with her occupational therapy sessions. They've really been working hard on her sensory and oral motor issues. The OT utilizes the horse for treatment with Taegan, which is awesome for sensory integration.

Speech is coming along well for the most part. It seems she has consistent set-backs. We take 2 steps forward and 1 step back pretty regularly. I'm amazed at what she knows, and is just not able to consistently express. For example, the speech therapist will show her two picture choices and will ask her to identify "Which picture shows an item that is crunchy?" (i.e. potato chips and pancakes for the two cards). Taegan answers abstract questions like that pretty consistently. There is so much locked inside her head, I just wish I could find the right key to unlock my daughter. One day, I will find it.

Physical therapy is going great! She still receives private PT two times a week. We're focusing on strengthening her knee control and hamstrings in order for her to be able to wear the SMO brace on her right foot consistently. She has another physiatry appointment this month - the Dr. will evaluate her progress and decide whether more Botox injections are needed at this time.

Taegan tries to see our chiropractor on a monthly basis. We've gotten a bit off our routine, as over the summer I had a surgery which has needed a lengthy healing time. She just loves Dr. Combs and his staff. He gives out suckers after all! :-)

School is going well for Taegan this year. It's hard to believe the year is half over at this point! Taegan loves to ride the bus, and often sings to the drivers I am told. She really enjoys her teachers and comes home saying the funniest things some days. Frequently I'll hear "Be quiet!" or "Sit down." and "Get your backpacks!" from the next room. It really does make me smile.

As this year comes to a close, I'd like to say thank you again, to all of Taegan's special angels here on earth. I know I've said it before, but it simply cannot be stated enough; without you, she couldn't have accomplished all that she has in the past two years. Thank you for supporting her at her ride each year and for all of your kind donations throughout the year that make HBOT possible for Taegan. Thank you for taking this journey with us... Until next time ~ Brightest Blessings to all of you, and may 2009 bring you happiness and good health.

2nd Annual Angels Ridin' 4 Taegan Motorcycle Ride

2008-07-25T14:06:00.001-05:00

Taegan's 1st Annual "Angels Ridin' 4 Taegan" motorcycle ride raised enough money for Taegan to receive 60 HBOT treatments in 2007. Taegan's physical therapists were very pleased with how well the treatments helped decrease the muscle tone in her legs! We're counting on God's magnificent earth angels (YOU!) to help us continue to provide this life altering therapy for Taegan in 2008. *~Thank You!!!~*

Our 2nd Annual Angels Ridin' 4 Taegan Motorcycle Ride to benefit Taegan will be on September 13, 2008 from 11am-4pm.

~Poker Run~ *50/50* ~Door Prizes~

Registration begins @ 10am

Poker Run begins @ 11am

Registration is $25 per bike (T-shirt & wrist band included. Xtra T-shirts are $10 each)

The Ride Goes To: That Place, Bugsy's, Fat Daddy's,and Somewhere

Burgers & Dogs @ Somewhere in Bargersville after the run.

Registration on 9-13-08 is at:
Century 21 Realty Group Ruch-Hicks
1680 W Main Street
Greenwood, IN 46142

Please make checks payable to: Angels4Taegan

For questions contact Tammie Lee Hall @ 317-627-7900 or email thall21228@aol.com
Angels4Taegan can be reached via email at angels4taegan@yahoo.com

Summer Update

2008-07-23T17:10:00.000-05:00

Hello everyone - It's been a few months since I've updated Taegan's blog.
Time seems to be scurrying by as of late. Taegan finished her first year of special needs preschool at the end of May. She really enjoys school and is excited about starting back up in a couple of weeks. She often says "playground friends" which I interpret as meaning she is asking when she will be returning to school to see her teachers and classmates.

It's hard to imagine, but Taegan turned four in June! She is growing up entirely too fast for my liking. She's really gotten tall in the last few months. Unfortunately, her growth spurts cause her more muscle tightness in her legs, and even her back as well. These things are to be expected because of the cerebral palsy. She's on the 'priority list' to receive more botox injections and again will be serial casted for several weeks. Not fun, but it's necessary for her to be mobile. Her braces are rubbing her heels (especially the left) due to the increased muscle tightness that came with this growth spurt. She'll need a new pair of those again as well when casting is completed. It's too bad we don't have a hyperbaric oxygen center close-by so we can get a few hours of HBOT during these growth spurs of hers. :-( I always wonder if she'd even need botox injections at all if we had regular HBOT treatments. (The whole botox issue is one I wrestle with constantly - it's quite scary to me if I'm being honest.)

We've been on the biomedical path for a few months now. In April, Taegan was seen by a DAN practitioner (DAN=Defeat Autism Now) who arranged for a battery of tests, including blood tests and urine analysis etc. The results showed she has metal toxicity, a common finding in children with autism. She's been on a regimen of vitamin and mineral supplements for about 2 years now, but we've recently made alterations to the regimen. We've added B12 shots, which she receives every 3 days. Also, we're doing chelation treatments with her to help pull the metals out of her body. She's on a prescription to help kill the high yeast overgrowth in her gut (another commonality in the ASD population as well.) It really is like a puzzle, finding what works and what needs supplemented etc. We've seen a lot of improvements in Taegan just from the B12 injections, which she's been taking since April.

We've had to put HBOT on hold for a few months while pursuing the biomedical approach. Biomedical treatments are quite expensive, and with ASD will likely be lifelong in order to manage the symptoms of ASD. As I've learned more and more about this disorder and the biomedical approach, it really comes down to an individuals genetic make-up and what the body is lacking or cannot produce enough of to function 'normally.'So you constantly need to be supplementing the body with what it needs, which can be quite a bit in fact!

Once chelation has done its job and pulled out metals that shouldn't be in the body, I'll continue with HBOT treatments. I'm hoping this can all happen in 2008-09. We're planning several fundraisers in order to help us provide this for Taegan.

Our 2nd Annual Angels Ridin' 4 Taegan motorcycle ride to benefit Taegan will be on September 13, 2008 from 11am-4pm. I will include further details in a future blog.

Taegan is continuing with her therapies weekly as well. She now has speech therapy 2x's a week (she also receives 60 min/week of speech at school during the school year.) She's receiving physical therapy 3x's a week (plus 30 min/week @ school.) She sees an occupational therapist 1x/week who has been focusing on Taegan's sensory needs as well as her visual deficits. She's been doing very well with her OT this summer. (She also receives 20 min of OT/week @ school). She's doing hippotherapy (therapy on horses) 2 hours a week. It's hard to believe she's been riding horses since she was 2 years old! Hippotherapy is her favorite! She says "horse, horses, and horsies" several times a week, which is her way of asking me when is 'horsie day.' It's really cute to hear her say it! She had 2 miniature horses at her 4th birthday party this year! She thought that was pretty cool. :-)

She's continuing to receive weekly craniosacral therapy treatments as well from our dear friend Mary VanNoy. Taegan enjoys Mary and always stops to play her piano after her session. :-) Taegan's monthly chiropractic appointments are also going well and have been especially important for her during this growth spurt phase. We are truly blessed to have such a wonderful group of therapists/doctors/teachers/friends in Taegan's life.

Thank you to all of Taegan's special earth angels for helping us to have the financial resources to provide the HBOT and biomedical treatments that have helped her thrive in 2007-08.

USA Today Advertisement 2-12-08

2008-02-12T13:54:00.001-05:00

This advertisement appeared in the February 12th 2008 edition of the USA Today newspaper. I think it's worth circulating and sharing.

Postponed

2008-02-06T23:33:00.000-05:00

We've had to postpone Taegan's March 8th spaghetti dinner benefit until further notice. My beloved 79 year old grandmother is very ill and on hospice care out in Pennsylvania at this time. I'm unable to devote the time and energy to organize a successful fundraiser during this difficult time. Trying to put it all together and solicit community support while you are out of state is nearly impossible, as you might imagine.

We've also had to postpone Taegan's April session of HBOT for several reasons; The main reason being, without having this fundraiser in March, we do not have enough money for the therapy.

Hopefully this spring we will be able to have the spaghetti dinner benefit for her. Right now, it's just impossible to speculate a future date.

Taegan's 2nd Annual "Angels Ridin' 4 Taegan" motorcycle ride will be taking place in July. We're excited about that! :-) I'll post more details when they become available.

In the meantime, if anyone is interested in sponsoring Taegan's ride and having your name/company name placed on the Angels Ridin' 4 Taegan T-shirt, please contact us at: angels4taegan@yahoo.com

Winter Update

2008-01-10T17:12:00.000-05:00

Hello everyone! Hope everyone has been staying healthy this winter.

Taegan finished up her 120th session of HBOT on December 20th. She's been doing very well. She again improved with her range of motion in all of her leg muscles by about 10 degrees. That is really WONDERFUL news! Her speech also improved during the treatment sessions. I heard many new words and several 2 and 3 word sentences sporadically. Since we've been home though, the speech hasn't been as fluent unfortunately. We still hear words intermittently and occasionally an "I eat" or "me sleepy" comes out, and that's always nice.

She's finally getting back into the routine of things again...we all are! Things have been so hectic since Thanksgiving, some down time will be nice. Sadly, Taegan's great grandfather McFarland passed away on December 23rd. We traveled to Greensburg, IN for the services over Christmas break. That same week, Taegan's great grandmother Cupp was admitted to the hospital in Pittsburgh, where she still resides at the time of this writing. Taegan, my mom and I traveled to Pennsylvania shortly after Christmas to spend some time with family there.

Taegan resumed her therapy and school schedule this week as well. She really enjoys school from what I can tell. She has been in such a good mood all week. :-) In recent months, Taegan has been displaying more and more signs of autistic behavior. It has been quite difficult for me to deal with actually, even though I am very familiar with the disorder, having taught special needs preschoolers for 5 years. When it's your own child, it's a different reality that no one can prepare you for. She hasn't been 'officially' diagnosed with the disorder, but it has been mentioned several times by various medical professionals over the past 18 or so months.

I have so many emotions... Part of me questions why cerebral palsy/PVL/apraxia/genetic disorder wasn't ENOUGH for Taegan to deal with in this lifetime. But I know these things are not up to me. Still, it's a struggle to put things into perspective sometimes, especially on those challenging days, when all you want to do is fix things for your child, but you simply cannot.

Someone recently said to me, 'This is just how your child is.' as if I didn't approve of who she was, or who she might become. I don't think people who have never been put in the position of having a special needs child can truly understand what it's like and everything it encompasses. It's not that I don't love my daughter just the way she is, it is that I want the best possible life for her. And for Taegan, that means living the least restricted life possible. If there's a chance in hell that her physical limitations can be lessened, you'd better believe I will do everything in my power to provide that for her. There is HOPE out there... I have strength and determination. Most importantly... I believe.

And so it seems another journey is beginning...

For many months now I have been researching how to eliminate toxins from the body. Specifically, heavy metals. There are all kinds of theories out there on the cause of autism, and I don't discount any of them. Who knows what the root cause is, or if it is just one causative factor. I strongly feel her body needs to be cleansed of the metals (which come from a variety of sources, but predominately come from vaccinations/routine shots.) Taegan received the RSV (also referred to as Synagis) shot monthly during her first year of life. That was a total of 9 shots right there. I have searched for the ingredients in those shots, and not to my surprise, the ingredients cannot be found, on-line at least. Back in April, it was found that Taegan had a copper toxicity. The level was alarming, to say the least. I tried my best to remedy that problem as the Cole Center suggested. The diet alteration didn't bode well. Taegan took the supplements without a problem. I've got her back on the supplements for copper elimination. We'll see how that goes.

I'm hoping to have a comprehensive biomedical work-up done on her in the near future. I'm researching several doctors/facilities, with the most promising ones (closest to us) being in the Chicago area.

In the meantime, I'm organizing the spaghetti dinner benefit for Taegan. It will be on March 8th in Madonna Hall of Our Lady of Greenwood Church. More details to follow.

Til' next time. :-)

Another Round of HBOT Underway

2007-11-30T16:41:00.000-05:00

Taegan finished her series of serial casting in mid November. She had 4 total sets of casts by the time the process was complete. It went very well. Both of her ankles are within normal ranges of movement. The physiatrist has suggested a possible regimen of Botox injections every three months. I’m hoping the hyperbaric oxygen treatments will help to maintain her range of motion in her leg muscles and perhaps we wont have to have any more injections of Botox. She might have to continue with serial casting after large growth spurts throughout her adolescence.

Taegan and I made another 10 hour trek by car out to the Blue Ridge Mountains of North Carolina where she is receiving another round of hyperbaric oxygen treatments. She’s completed six dives so far (as I type this) and already, her speech is flourishing. It always amazes me how quickly the oxygen begins to work wonders in her body. I hope these improvements can be maintained after we complete this round of 40 treatments. I’m also anticipating more improvements in her muscle tone/range of motion, especially in her legs. After our July session of HBO treatments, she made significant improvements in her range of motion in her legs. (Read previous posts from July/August for specific measurements of improvement in her range of motion.)

We’ll be finishing up this round of HBO treatments a few days before Christmas and then we will return in April for her last session of the 120 HBOT program. I’m organizing a spaghetti dinner/bake sale/auction for March 8th in an effort to raise enough money for the lodging and transportation etc. that we will need for that session.

Award winning composer/keyboardist/soundescape artist Jan Pulsford has once again generously offered several of her Christmas compositions up for download in the “download and donate” section of Taegan’s website. http://www.musicallmusic.com/angels4taegan_music/index.html

Jan’s main website can be found at www.musicallmusic.com

We hope everyone enjoys a happy holiday season. May you all have a blessed 2008, filled with an abundance of love, laughter and peace.

Casting Update

2007-10-29T23:29:00.000-05:00

Casting is going well. Taegan is in her 3rd set of casts this week. The doctor is pleased with her progress so far. Hopefully she will only need two more sets of casts in order for her range of motion to be where they would like it.

She was fitted for a new pair of AFO orthotics (leg braces) last Friday. Once casting is completed, she will hopefully be able to start wearing her AFO's on a regular basis.

This week she has had to wear a knee brace on her left leg at night while sleeping. Her leg muscles were beginning to shorten due to her keeping her legs pulled up close to her for a prolonged period of time.

She's still able to participate in all of her therapies during casting which has been a blessing.

Cramping only proved to be a problem during the first week and a half of the casting process, so I'm also thankful that it has tapered off and she is able to have restful sleep.

More updates soon....

Casting This Week

2007-10-09T12:41:00.001-05:00

I wanted to update everyone on Taegan's progress.

Taegan caught a pretty bad viral infection (are there any good ones? LOL) 3 weeks ago and is still on the mend, recuperating from that. She missed a week and a half of school and therapies, which threw off her whole routine. She was able to receive the Botox injections 2 weeks ago, and we are just now beginning to see the effects.

She is no longer able to stand or walk, as it is extremely painful for her to place any weight on her left leg. We believe this is happening because the Botox is relaxing that left calf muscle enough now that Taegan is no longer able to depend on the high tone, or tightness of that muscle to bear weight on (usually up on her tip toes.) It's a muscle that she has never been able to use before which now that it is loosening up, is obviously weak from never having been used.

It is probably quite sore as well. Taegan has been saying "foot ow" quite frequently in the past week. Last night I heard her saying "ohhh please... please foot... no foot...please." My heart aches for her, that she is having to experience such things. But really, it is good that this is happening, because it means changes are occurring in her muscles which will hopefully allow her to have more functional use of her legs.

The Botox can last anywhere between 3 to 6 months. It is different for everyone. So, she could receive another dose in 3 months if needed. Most likely, she will need to have this treatment on a regular basis, especially during growth spurts, as the muscles will lengthen and tighten during periods of growth.

Serial casting was supposed to occur last Friday, the 5th. Taegan was still too sick at that time, so casting will take place this Friday, the 12th. I am apprehensive about casting, but realize it is necessary to hopefully achieve the outcome we desire. I'm just worried that since she is already having complaints of her foot hurting, when it is casted it is going to cause even more discomfort and cramping.

Over the weekend, Taegan's foot was hurting her so badly that she screamed when Gramma tried to take off her shoe. She was so sensitive, she pushed away my hand and said 'No!' when I attempted to feel for swelling etc.

On the brighter side, she was in wonderful spirits Monday after school. She really enjoys school and is a much more pleasant child when it's part of her weekly routine. :-)

In other news, I am busy planning the spaghetti dinner benefit for Taegan. It should be either the first or second Saturday in March. This benefit will help pay for our accommodations while we stay in North Carolina for our final round of 120 HBO sessions in April. Watch Taegan's blog space for further details.

Thanks to everyone for keeping Taegan in your thoughts and prayers as she goes through this difficult month ahead of serial casting.

Botox Injections & Casting

2007-09-18T12:58:00.000-05:00

Hello All ~

It's hard to believe fall is upon us already! Taegan has really enjoyed being outdoors this summer. She is very curious about grass, trees, flowers, and especially rocks!

Taegan began a special needs preschool program in August which she attends 4 days a week. It is provided through our local school system. It took a few weeks for her to adjust, but she is doing well now. She LOVES riding the school bus especially. Her new words are: friends, school and bus. She's singing a lot more songs now, and is able to pronounce the words quite well. She loves to sing "Head, Shoulders, Knees & Toes."

She receives PT, OT and Speech therapies through school now, but she still receives them privately as well. She actually has PT 4x's a week, OT 2x's a week, Speech 2x's a week, Hippotherapy 1x/wk, craniosacral therapy 1x/wk and chiropractic care 1x/month. So, we're still busy, busy, busy!!!

We met with the physiatrist (doctor of physical medicine) last week and decided to go ahead and try the Botox injections and serial casting. Taegan has had such a growth spurt, that her muscle tightness in her ankles is extremely tight now. It is causing her to be unstable with her balance and she has much difficulty walking. Her braces have not fit her for several months now, which is also contributing to her spasticity. The braces keep her muscles stretched out when she wears them. Since she's been unable to wear them, the problem is exacerbating We don't want to fabricate a new pair until after the Botox and serial casting, or they will not fit properly.

She will have her Botox injections on September 26th. We are only doing her calf muscles this time to see how well it works for the rest of her foot. She will be able to have more injections in 3 months, so at that time, the Dr. might decide to inject different muscles, depending on the outcome of the casting and first injections. She will have her casts put on the following Friday (Oct. 5th). Both of her legs will be casted at that time. The Dr. will stretch her foot as far as the muscle will allow, and then cast it in that position. She will have the casts for one week. Each Friday she will have the casts taken off and her foot muscles stretched again, even further, and then recasted in that stretched position for another week. This process will go on for about 4 weeks, depending on how fast the muscle stretches.

Please have good thoughts that the muscle cramps/charlie horses for Taegan will be few and far between! I can only imagine how this might go... when she wore her night splint on ONE foot, she would have terrible muscle cramping where she'd wake up screaming and grabbing at her leg. I could see it spasming. I don't know how I'll be able to help her when this happens with casts on that you cannot take off to rub the muscles when they're spasming.

The Dr. also gave us new dosing instructions for the Melatonin (natural sleep aid) to try for two weeks. Hopefully this will help regulate her insane sleep patterns!!! Lately she goes to bed about 10:30pm, and is up by 3am. She then stays up (in her bed) until roughly 7-8am and sleeps until I wake her for school! She's been grumpy and moody a lot, I presume from this erratic sleep schedule.

The chromosome testing showed that Taegan has what they call a duplication of 8p23.3
It is a duplication of part of the 8th chromosome. Instead of having 2 copies of that part of her 8th chromosome, she has 3. It is a very rare disorder, so rare in fact, that the genetics doctor had to get all the information on it from Wales. They sent me a pamphlet on the disorder about the studies these doctors in Wales have conducted on people with this disorder. The pamphlet only references 40 people who have this genetic disorder. I've taken the information with a grain of salt, because quite frankly, Taegan really doesn't fit into many of the categories they address in the pamphlet.

Some of the physical symptoms of the disorder which Taegan exhibits are: flat nose bridge, extra skin folds around the eyes, lower set ears, and a shared toe joint. The pamphlet discusses mental retardation and heart defects, which appear to be common for this disorder. It's not treatable or curable. Since Taegan has Cerebral Palsy, we're not sure if it is her chromosome disorder that is causing her delay or the CP. That is something we might be able to distinguish as she gets older.

We might have to investigate the possibility of a heart defect, although I would think the NICU would have found evidence of that after her birth. Taegan had a hole in her heart at birth, which they monitored during her first week in the NICU. They did several echocardiograms during that time, and the hole in fact closed on its own by the end of the first week.

We're looking forward to fall... pumpkin decorating, apple cider and Halloween! Perhaps Taegan will go as a mummy...her casts would go quite well with that gettup!
Before we know it, Taegan and I will be headed back out to the Blue Ridge mountains of North Carolina for her third set of 40 HBO treatments! (November 25-December 18)

Improvements Abound!!!

2007-08-04T12:22:00.000-05:00

Taegan's physical therapist measured her range of motion (ROM) in her legs on Thursday and the improvements were quite significant!

She measured her ROM on her last visit, just before we left for the HBO treatments. So these changes have occurred since her last visit, obviously as a result of the hyperbaric oxygen treatments....

Taegan's hip abduction increased by 20 degrees on her right leg. On her left side, she improved 10 degrees. Hip abduction is the movement you make when you lift your leg straight out (away and to the side) from your body, while keeping your knee straight.

She also improved 15 degrees on her right side with her hip flexion. On her left side, little change, if any was noted with this movement. Hip flexion is if you would lie on your back and raise your leg straight up into the air, keeping your knee straight, and trying to get it as close to your shoulder as you can.

Both of her ankles remained the same in measurement, which was a bit of a disappointment, but I'm extremely happy with the muscle changes this most recent HBO session has helped her achieve. We could potentially see more improvements up to two months down the road from this last set of 40 HBO treatments. The oxygen will continue to 'dissolve' inside her blood stream for up to two months.

It's extremely important right now that we hit all her therapies really hard. The oxygen has awakened dormant neurons in her brain, and also has encouraged new capillary growth. We now have to 'train the awakened neurons' by making sure she gets all the therapy sessions she can receive. I'll be increasing the time spent working with her here at home on all her stretching exercises and speech techniques etc.

Taegan's had a growth spurt too during the past month. She's gotten taller, her hair has grown quite a bit and her feet have grown. Even her finger nails grew like wild fire while we were out in NC. I had to cut them twice a week! Since we've been back, everyone has noticed that she's taller.

Her speech continues to flourish! She comes out with new words almost daily! Her latest phrase is "Uh-oh! I get it." She's so animated when she says it too! She had her first speech session Thursday as well, and she was coming out with all kinds of words and phrases I'd never heard before. She has SO MUCH locked inside her brain, she just needed a little oxygen to help it come out. :-) She was saying "Mine" during speech, and "what?" and "yes" and "I want it" and "I did it!" Oh, and one of her favorites now is, "I know." And she says it appropriately, that's the funniest thing. She started that one while we were out in North Carolina. While in the bath tub, I told her the soap was slippery, and she matter of factly said, "I know."

She's still doling out hugs and kisses too! You can't ever have enough of those, that's for sure!

Thanks to all of Taegan's earth angels for making these accomplishments possible for her.... it is most definitely the hyperbaric oxygen treatments that are awakening our daughter before our very eyes!!!!

Second Set of 40 HBO Sessions Completed

2007-07-28T23:35:00.000-05:00

Taegan finished up her second set of 40 HBO treatments on Thursday morning at Miracle Mountain in North Carolina.
We ended up having to stay a few extra days because we missed 4 sessions due to bad head colds (both of us.)

This time I noticed an increase in her speech and an increased awareness of her surroundings. Also, her social skills appeared to improve, as she actually engaged in play with other children there at the clinic. It was so wonderful to witness that. She is definitely more 'spirited' and filled with an abundance of energy. So many small things improved this time around, which really have filled my heart with joy. One evening, I opened the car door to get Taegan from her car seat, and she looked directly at me in the eye and smiled the sweetest smile. I'm sure that doesn't sound too significant to those of you who don't know Taegan well, but it really was a major milestone in my book.

There are so many more instances I revel in, and I wrote them all down in a journal to keep for her as she grows. I imagine one day she will read through them and appreciate how far she's come, and all the achievements she attained.

She has been able to express more verbally during and after this round of HBO. She is speaking several 2 and 3 word sentences now. She put her arms around my neck last week and said "I give kiss." and leaned in and gently kissed my lips. She then pulled back and said, again while looking in my eyes, "I give hug." and squeezed my neck as tight as she could. Of course I turned into a puddle right then and there! It was such an amazing feeling to experience my child EXPRESSING her WANTS in intelligible words appropriately! She's continued to do this almost daily, which I am so thankful for indeed.

We'll be returning to Miracle Mountain at the end of November for our 3rd set of 40 treatments. Our 4th round of 40 will be completed by the middle of May next year.

I purchased a wonderful documentary video that was put together by the Discovery Channel called "The Healing Chamber." It is an in depth look at how hyperbaric oxygen is being used to treat various illnesses and diseases, including brain injury (like Cerebral Palsy.) Hopefully I can upload it and provide a link for everyone to be able to view it if you're interested.

There will be a car show to benefit Taegan on Sunday, July 29th from noon to 6pm in the parking lot of the Lone Star restaurant off US 31 South in Greenwood. All proceeds will be donated to Taegan's fund. This car show is for all car buffs and car enthusiasts. Anyone can enter their car into the show for a minimum registration fee of $5.

I am planning to organize a spaghetti dinner and/or pancake breakfast to benefit Taegan's fund in order to help pay for the housing facilities and car rental we will need for our next two HBO sessions (housing for one month, each session.) If anyone has any suggestions/tips/advice, please contact me! :-)

Taegan will begin preschool on August 13th. We have a boatload of appointments between now and then... geneticist, orthotics, neuropsychologist, OT, PT, SLP, CST etc. Summer has flown by... it's hard to believe it will be over soon!

Thank you to all of you who continually check in on us... we truly do appreciate it!

Enjoy the rest of summer 2007.....

Headed to the Blue Ridge Mountains

2007-06-22T23:15:00.000-05:00

Taegan and I are headed out to the Blue Ridge Mountains of North Carolina for the month of July. She'll be receiving her second set of 40 HBO treatments at a facility there called Miracle Mountain Children's Hyperbaric. We'll be driving out on June 30th, and treatments will begin on July 3rd.

On July 2nd, I will have to drive Taegan to visit with an open minded Dr. who works closely with the the facility, in order to obtain a prescription for the HBO treatments. I called for directions to the Dr's office today, and was quite shocked to learn it is 2 1/2 hours away from the hyperbaric clinic! Should be an interesting ride all around... Both facilities are deep in the mountains, and having lived in flat, corn field land-Indiana most of my life, it will be a refreshing change.

I am a little nervous though... the friendly woman I spoke with on the phone this afternoon from the Dr's office advised me to pump the brakes while driving through the mountains, and not to push hard to the floor on the pedal, or I might burn up the brakes! I definitely want to be sure to complete Taegan's 120 sessions during the summer and spring months, and avoid the winter months! I don't want to go sliding off the side of a mountain or anything! LOL

Taegan's motorcycle ride was a wonderful success! Everyone worked so hard to make it run smoothly, and it turned out to be an excellent day! We raised just over 6k for Taegan! That will pay for all 120 treatments of HBO at Miracle Mountain. We are thrilled!

Well, there's a ton of packing to be done... will update as I can....

Much Love & Brightest Blessings To All!!!

Auction Items

2007-06-08T03:39:00.000-05:00

Adina Francis is a long-time friend of mine who enjoys drawing in her free time. She's graciously donated several original art work pieces to be auctioned off to benefit Taegan's fund. The water color of Nascar driver Tony Stewart will be one of the pieces auctioned off at the June 16th motorcycle ride. All art work will be matted and framed.

Here is a preview of some of the items that will be auctioned off soon via eBay and local fundraising events.

Richard Oakland is an exceptional photographer with a unique eye from the UK. He has generously donated a limited edition, autographed, numbered print from his collection. It is entitled "Creeping Sun."

To view more of Richard's inspiring collection, visit one of his three web sites at:
http://www.clickinhistoryphotography.com
http://www.clickinhistory9.blogspot.com http://www.photoboxgallery.com/839059

This is a 2006 Harley Davidson mountain bike. It is barely used and in mint condition. Previous owner only rode it twice.

If anyone is interested in the mountain bike or the four beautiful pieces of art work listed here, please contact me via angels4taegan@yahoo.com. Also, dimension specifics can be provided upon request.

Thanks again to everyone for their continued love, prayers, and support! You are helping to change Taegan's life forever... and we will always be thankful for that!

Bike Ride To Benefit Taegan

2007-05-06T16:26:00.000-05:00

For the locals: Tammie Lee Hall and Century 21 Realty Group Ruch-Hicks have organized a motorcycle ride on the south side of Indianapolis to benefit Taegan. The ride will take place, rain or shine, on Saturday, June 16th, 2007.

The ride will begin at 11am from Century 21 Realty Group Ruch-Hicks. Stops on the ride include: "Somewhere" in Bargersville, "Route 67" in Mooresville, "Jakes" at Southport Rd & Bluff Rd and concludes at "That Place" off Country Line Rd. and Emerson Ave. The registration fee is $25 per bike. This includes a free Angels Ridin' 4 Taegan T-shirt (additional shirts are $10/each) and a wrist band.

There will be a poker run, 50/50, and great door prizes at each stop. Free burgers and dogs will be provided by "That Place" to all registered riders after the ride.

Registration can be completed on-line or registration forms can be printed off from Taegan's web site http://www.angels4taegan.com with checks made payable to Angels 4 Taegan and then mailed to:

Century 21 Ruch-Hicks

1680 W. Main Street

Greenwood, IN 46142

Attn: Tammie Lee Hall

So, come on out for a terrific time while helping a great cause!!!

Back Home Again In Indiana

2007-04-21T23:00:00.000-05:00

Taegan successfully completed her first set of 40 HBO treatments in Cincinnati and will resume her routine therapy sessions on Monday. (PT, OT, DT, CST, Speech, Nutrition Therapy, Hippotherapy, and Chiropractic care.)

I was a bit sad when the HBO sessions were complete because Taegan seems like a different child while receiving HBO. She was very content and social (which she hasn't been in recent months prior to HBO). Also, one of the best things to come from the HBO treatments was a major improvement in her sleeping habits. She was sleeping all through the night (except for 3 nights during the 40 treatments, but even then, she was only awake for an hour or so then!) She slept 8-10 hours per night, which was truly wonderful! She is such a different child when she has SLEEP! (Aren't we all?) In her 3 short years here on earth, she's never slept for an 8 hour stretch of time, ever!

Her appetite also sharply improved during HBO. I am positive she has gained weight. We'll see just how much when she meets with the nutritionist next week.

Unfortunately, she has resorted to her old sleeping habits. She's still pretty much a pleasant child, just a bit moody at times. I've recently learned that her moodiness and insomnia could be coming from a copper toxicity.

While at the Cole Center for Healing, I had a tissue sample sent to the lab for extensive analysis. The results were really quite shocking. Taegan has very high copper and aluminum levels, and has very low sodium and potassium. Her adrenal gland is also not functioning as it should be and is causing a glucose intolerance in her body.

I've purchased the suggested supplements to help correct the various imbalances in her body and hopefully we'll begin that regimen along with major dietary changes next week after consulting with her nutritionist.

Another thing I did not realize is that copper affects the ability of the muscles to function properly. It even affects the myelin sheath of the nerves (which is already a concern/problem area for people suffering from CP!) So, I'm hopeful that once the supplements and dietary changes correct her imbalances, we'll see some positive effects reflected in her mood, improved sleeping ability and muscle function.

She showed such positive improvement during that first week of HBO, especially with her muscle tone. She was able to get her left foot flat on the ground for the first time in her life. By the second week of treatment, her braces no longer fit properly (I am guessing it is because of the changes in her muscle tone, but I'm no expert!) She can no longer wear them because they rub blisters on her heels, especially her left heel. However, she isn't really putting her left foot down flat anymore on her own. I have to physically make her do it now, which still baffles me. When she walks, she's back to walking on her tip toes on the left, and is very shaky and unsteady.

My only rationale for this is that perhaps other muscles in her legs loosened up too, considerably, during HBO and she has never had to use those muscles before. I'm wondering if she's just unsure of how to use those muscles to steady herself and walk... they obviously would be weak from never being used before. Maybe we just have to focus on strengthening those muscles in order for all the muscles in her leg to work synergistically. I'm hopeful that her physical therapists might have some insight into what is going on. The HBO technician reminded me that it is possible to see continued changes from the HBO treatments up to 1-2 months after the cessation of treatment.

Her appetite continues to be healthy and she's even trying some new foods now. Of course, we'll be altering her diet quite extensively soon (no refined carbs and no sugars, including fruit and fruit juices.) Dietary and supplement recommendations were included in the tissue analysis process. They recommended Taegan be retested in 3-4 months, so that supplements can be adjusted or stopped altogether if no longer needed.

Meanwhile, we're continuing to raise money for Taegan so that she may continue to receive the HBO treatments. I'm hoping she can receive at least another 40 before she begins preschool in August.

I mentioned briefly in a previous post, I've met a very generous man who has a HBO clinic in North Carolina. He's offered 120 HBO treatments to Taegan for $6,000 (for a limited time, as his company is a cooperative.) The 120 sessions do not have to be done consecutively, but can be broken up into sets of 20 or 40 until completed.

I'm researching the possibility of flying there with Taegan when the time comes. There are several non-profit organizations out there (I believe that is correct) that offer free flights to parents/children of special needs, to help them receive the necessary medical care they require. I'm still just learning about this possibility....

Many thanks to the Women's and Men's Eagles Club of Fairfield, Ohio... they raised $505 during their recent benefit for Taegan on April 12th. They are a wonderful group of people who have taken a special interest in helping Taegan.

Taegan seems to be missing Jake and Alli... she looks all around the living room and kitchen calling "baby!!! baby!!!" and I think she's looking for her 6 year old friend/playmate Alli. She often times called her baby while we stayed there with the Ball family in Cincinnati.

Taegan was evaluated this week by the Special Services team for our local school system. They will use the results to qualify her for services through the school system when she starts in the special needs preschool program this August. We'll have her case conference to determine eligibility and to write goals in late May.

It doesn't seem possible, that my baby is ready to begin school!!! I still cannot believe she will be turning 3 in June! The NICU days really don't seem all that long ago... I still have dreams (nightmares!) about her time there. It absolutely doesn't seem like 3 years has passed since her traumatic birth. Where does the time go?

I'll post another update soon... ~Be well~

**Pictures: 1)Taegan inside the HBO chamber. 2) Taegan and Certified HBO Technician Scott Fuhr. 3) Cara, helping Taegan with the steps at the Eagles Club benefit on April 12th. 4) Alli and Taegan having fun in the bubble bath! 5) Taegan examining her new Barbie on Easter. 6) Alli, Cara, and Jake... Jeff was working when this pic was taken. Taegan adored him too!

Eagles Club Benefit for Taegan

2007-04-11T13:59:00.000-05:00

The Men & Women's Eagles Club of Fairfield, Ohio have been instrumental in helping to raise money and awareness for Taegan and our cause. And, they continue to be supportive and interested in her progress while we are staying here in Mason, Ohio as Taegan undergoes her first 40 hyperbaric oxygen treatments.

They will be hosting a cook-out at the club on Thursday, April 12 at 5pm. Proceeds from the cook-out will be donated to Taegan's medical fund.

The Eagles Club is located at:
8560 Michael Ln, Fairfield, OH

If you're in the area, stop by and enjoy some good food for a great cause!

Taegan's Progress After 28 Treatments

2007-04-10T23:30:00.000-05:00

Hello again everyone. Thought I'd take a few minutes to write an update on Taegan's progress. She's completed 28 hyperbaric oxygen treatments as of this date. I'm continuing to see positive changes from the HBO therapy.

Some more obvious gains are her improvements with speech. She is very vocal now, and jabbers almost constantly. She's saying new words almost daily. And the fact that they are spontaneous is even more thrilling. She will say "Hi!" often times when she enters a room (to whomever is in the room, and even to the dog!) In the past, you'd have to prompt her, sometimes 5 and 6 times before she'd say "Hi!" if she'd even say it at all. Now, she's saying it on her own many times, with no prompting.

She has continued to say "Yes" when asked a yes/no question, but much of the time requires prompting to do so, but STILL! That is a MAJOR improvement for her. Her speech therapist will be thrilled, I'm sure! (We've worked on yes/no for the better part of a year it seems!)

Taegan has said "Open!" to the HBO Technician twice now, as she waits for him to open the chamber door. It's too cute to hear her little voice... and to hear her saying an APPROPRIATE word in the context of the situation, all on her own. She was even proclaiming "Open!" to each door we came to at the clinic today. It's so wonderful to see her grasping the 'cause/effect' of her language.

Her social development has even improved! I'm not sure how much of it is from being around a 6 and 9 year old daily, or how much is from the HBO, but she definitely is making gains socially. She continues to have better eye contact, and is smiling at people and interacting with them, and seeming to ENJOY it, whereas prior to March 27th, she showed little interest in interacting with peers. Her shyness with the opposite sex is diminishing as well. She no longer cries when Jeff talks to her or when the male technicians at the clinic help her in/out of the chamber.

Another major improvement has been her increase in appetite. She is eating so well, I would swear she's gained at least 5 pounds!!! I am anxious to see what the nutritionist reports when she meets with her on April 25th. She's still pretty picky with what she will eat, but she definitely has a healthier appetite since beginning HBO treatments. She ate an entire can of green beans for supper this evening, along with a Nutra Grain cereal bar, 5 Ritz crackers, 4 nice sized strawberries, 6 ounces of chicken noodle dinner and 6 ounces of apple juice!

The improvements with her muscle tone have seemed to plateau a bit this week. She seems to be fighting off an illness... perhaps a cold? Her muscle tone in her legs actually began to feel tighter at the end of last week, which was concerning to me. But she was showing improvement in other areas, as mentioned above.

In the past, when Taegan is ill, it presents in her muscle tone first, and then she has the more obvious symptoms of illness like runny nose, fever, cough etc. So, I have been worried that she is trying to fight off an illness. So far, she's only had a bit of a runny nose. The drastic change in weather hasn't helped anyone, that's for sure. It was 85 degrees here in Cincinnati for 3 or 4 days last week, and overnight the weather pattern changed and the high for the next few days was in the upper 20's! And it snowed off/on for 2 days! It is plain crazy.... Snow on Easter... Go figure.

I know that changes are occurring in her legs though, because her AFO's (leg braces) no longer fit properly! I was trying to keep her in them as much as possible to get prolonged stretching of her leg muscles, and she was crying and trying to get her AFO's off, which is unusual for her. When I took them off, I noticed a red blister on her left heel. It's since scabbed over, and still looks pretty painful. So, she's not been able to wear them since. When we get back to Indy, I'll have to take her back to the orthotist and see what can be done so that they fit properly again.

Her stretching exercises are still much easier to do now, which I'm thankful that hasn't changed with this recent muscle tightness she's experiencing. She's not been standing flat footed as often as she had been the previous week. She's loosing her balance quite a bit now, and has resorted to tall-kneel crawling some.

Today I noticed she winced as she put weight on her left leg and her heel went down to the floor. She picked her leg up real quick and decided to crawl instead of walk. I'm not sure what is going on with that.... I might try to talk with Dr. Cole about these things, and see what his thoughts are about her progress.
We've got 12 treatments left....

Meanwhile, I've recently come across a facility out in North Carolina that has the same type of HBO Chamber/set-up as the Cole Center does, and they are offering 120 HBO treatments for $6,000 (limited time only!) That is an AMAZING deal for HBO! The 40 treatments Taegan is receiving presently cost a total of $4,620. I have spoken with the owner of the clinic in N.C. and told him I'm going to try my best to raise 6K before the end of summer so that Taegan can receive the 120 treatments before she begins preschool this August. He said he'd work with me if the offer was expired when we were able to come to his clinic.

So, once we finish up here in Cincinnati, I'm going to try to organize several more larger scale fundraisers back in Indy. If any of you would like to volunteer to help me out with fundraising, please contact me! I'd like to organize a spaghetti dinner and a silent auction.

There will be a motorcycle ride to benefit Taegan in June. I will post more details on that as I get them.... until then, keep checking back for updates.

Big hugs to everyone for all their prayers, love and support for Taegan!!!

More Hyperbaric Oxygen Therapy Photographs

2007-04-06T23:50:00.000-05:00

HBO Photos

2007-04-05T01:24:00.000-05:00

Here are some recent photos of Taegan in the hyperbaric chamber as well as photos of the chamber itself. Taegan really enjoys the therapy... she sometimes cries when we have to get out of the chamber! She is always in good spirits after the treatments... perhaps it's a side effect? Enjoy the photos. The last photo is of her standing flat footed on her left leg. I am shifting her weight to the left so that she HAS to weight bare through that leg and foot, as she still will not do it on her own. I'm sure it's awkward for her since all she's ever known how to do is stand on her tippy-toes on the left foot. I hope her progress continues to be as wonderful as it has been to date.

7 Down, 33 To Go

2007-03-30T13:18:00.000-05:00

Taegan and I are here in Cincinnati, staying with my wonderful friend Cara and her beautiful family. They have been so generous to us, opening their house to us for the month while we undergo the hyperbaric oxygen therapy treatments.

Taegan had her evaluation with Dr. Cole on Tuesday, and also began treatments that day as well. The evaluation went well, and I really enjoyed the time with Dr. Cole. He is a very knowledgeable man. He feels that Taegan will be a wonderful candidate for HBO and that her progress should be remarkable. He told me a story about a man with CP who received HBO for the first time at age 20, and the improvements for him were significant. He also explained that the benefits Taegan receives from HBO will be PERMANENT. Even if she regresses during illnesses, she will not lose any function she gains as a result of HBO. That was a relief to hear, as I wasn't sure as to the longevity of HBO. He also explained that each person is different, and each person benefits from a different number of HBO treatments. For example, he can't say that after 40 treatments, Taegan will have received all the benefit from it that she possibly can... it may take 50 treatments, or 120 treatments. No one knows... the body will tell you when it's done all the healing it can do with these treatments.

We also met with a homeopathic doctor who discussed supplements with me and several other testing options to help Taegan achieve optimum health. I will probably put her on a few supplements that will assist in healing. Omega 3 fatty acids is one that was mentioned. This helps with the mylenation process (protective layer covering the nerves in a person's body.) With CP, myelination is affected.

As of this evening, Taegan will have completed 8 'dives,' or treatments. We do two treatments a day, about 4 hours apart, and will complete a total of 40 altogether.

She is doing quite well for the 90 minute sessions. The HBO is technically 60 minutes in duration, however, we're in the chamber for approximately 90 minutes. It takes about 10 minutes to drop the atmospheric pressure down to 1.5 ATA (about 20 feet below sea level) and it takes about 15 minutes to return to sea level ATA. Taegan fusses a bit while we descend, as it is slightly uncomfortable on the ears. I have a whistle that she blows while in the chamber (and I squeeze her nose while she blows) that helps to release the pressure build-up in her ears. I also bring in a bottle of juice, as it also helps to drink during the pressurization and de-pressurization periods.

The chamber has 2 portholes that you can see out of (and outsiders can see in.) Outside one of the portholes hangs a TV. We watch videos through the porthole, and the sound is played inside the chamber on a speaker system. Once we are at 1.5 ATA, I place an oxygen hood over Taegan's head and hook up her O2 tubes to the bottom of the hood, and the 100% oxygen is piped in through the tubes and stays inside her hood. So, she is always breathing 100% oxygen while the hood is on. Inside the chamber itself, there is normal room air. I do not wear a hood while I'm in there with her (I'm sure I'd have to pay for that!) But, the technician did say I can also benefit from the treatments just by breathing the room air at the 1.5 ATA depth.

I have felt more tired since doing the treatments (which is a side effect of HBO actually.) In fact, Taegan has slept through the night the past 2 nights now! That is AMAZING for her. As many of you know, her typical sleep pattern prior to HBO has been to sleep for 4-6 hour periods (6 on a good night!) and then be up for several hours before falling back to sleep. She has very restless sleep. Last night, she went to bed at 10:30pm and when I turned in for the night around 1am, she hadn't moved from the position in which she fell asleep! I heard her change positions about 4am. She didn't wake once throughout the night. In fact, I had to literally drag her out of bed at 8:45am in order to get her dressed for her 9:30am treatment! She was not a happy camper!

She is jabbering a lot more, and is using spontaneous words! She answered a yes/no question for me yesterday for the very first time! I asked if she would like a drink and she said "YES" as plain as day! She also is saying Cara and Alli (the names of my friend and her daughter whom we're staying with here in Cincinnati)! She has been putting a few words together to say short phrases like "I did it." and "I go," "I eat," and even a "Mommy, I eat." She has never requested to eat before! She is counting more clearly now. (She counts to 20, skipping a few along the way). She's saying her ABC's more clearly as well.

I've also noticed she's beginning to make better eye contact with people, especially when they are talking to her. Usually, she appears to 'ignore' people when they are talking to her.

Her muscle tone is slowly improving. I had hoped for more drastic effects...but I keep reminding myself she's only had 7 treatments, and her feet are the furthest thing from her heart and brain! Patience, patience. :-)

Her muscle tone in her right leg and foot has improved by about 15 degrees, easily. However, her right foot was never significantly tight. It had some tone in it, and requires her to wear a brace, but nothing as significant as her left foot.

The high tone in her left foot is definitely changing though. I can get it to stretch with more agility than before and I'd say she's gained a few degrees of movement in it so far. When she is barefoot and walking, she is still up on her left toes, but I can tell it isn't as high. Her gait is very unsteady now, and she is falling a lot. So much so, that she has resorted to 'cruising' again... she tries to keep one hand on furniture or a wall while she's walking barefoot now, to help steady herself.

At first I was alarmed by this change in her walking pattern, but then I realized, her muscles are loosening up, and she's having to learn to adjust to that. Before this, she's compensated for her muscle tightness and walked high up on her tip-toes and the top half of her body sort of bent into a "C" shape as she walked, to balance herself. Now, she's not 'bending herself' into that shape as sharply and her heel is slightly closer to the floor.

When she is standing with both arms against a piece of furniture etc. she is standing FLAT FOOTED! She's never been able to do that prior to HBO! It's amusing to watch her do this, because I don't think she realizes she's doing it at first, and then you can tell when she realizes, because she will pull her foot up off the floor and rest it on top of her right foot! I also think that perhaps it feels like a muscle stretch while she's standing flat footed. I compare it to how you do a pre-jog warm-up stretch. I imagine that might be what she's feeling, and causing her to notice she's flat footed while standing.

I'm thrilled to see these small changes already after only 7 hours of HBO! I continue to pray we see some significant changes by the 40th hour!

I will be posting pictures of Taegan inside the chamber and doing her treatments shortly. I've gotten permission from the technician at the center to take some video as well. We just have to do it at a time when it's not so busy at the clinic. So, hopefully this weekend will allow that opportunity, and I'll post the pictures here for everyone to enjoy.

Thank you again to all Taegan's earth angels for helping to make these changes a permanent reality for her! After all, it is the kindness all of you showed by donating to Taegan's fund, to allow us this opportunity. We continue to be thankful for each and every one of you.

How HBO Can Benefit Taegan

2007-03-21T15:02:00.000-05:00

Hyperbaric Oxygen Treatments can help Taegan by promoting the growth of new blood vessels, decreasing swelling and inflammation in her brain around the damaged areas, deactivating toxins, and by increasing her body's ability to fight infection.

To view a more in depth account on the specifics of HBO and what it can help promote, click here: http://www.colecenter.com/therapies/hbot.html

HBO Rescheduled

2007-03-21T14:39:00.000-05:00

Taegan's HBO treatments were scheduled to begin on March 19th, however she came down with a bad head cold on Friday, March 16th and I had to cancel the appointment. I now have her cold as well....

The appointment is rescheduled for March 27th. We're keeping our fingers crossed that we'll both be healthy enough to begin HBO that day!

We cannot do HBO with any kind of head congestion etc. because we have to be able to equalize the pressure in our ears as the atmospheric pressure inside the chamber drops. We will be 'diving' to a depth of 20 feet below sea level. It is equal to 1.5 ATA

Fingers crossed that we both are completely healthy by Tuesday morning!
As always, thank you all for your continued support and prayers!!!

See HBO In Action

2007-03-09T00:29:00.000-05:00

Watch this Fox News video clip on how HBO therapy helped this 9 year old girl recover from encephalitis.
http://www.myfoxdetroit.com/myfox/pages/News/Detail?contentId=2299823&version=2&locale=EN-US&layoutCode=VSTY&pageId=3.5.1

Click the link below to view more details about JeAnnah's journey and how HBO helped her forego a life of permanent disability.
http://www.sljavahousecafe.com/HBOT/hbot.html

See how one mothers strength and determination in pursuing HBO ended up saving her daughter's life.
http://www.ihausa.org/video/montel.html

We're Headed To Cincinnati!!!

2007-03-09T00:07:00.000-05:00

I am so excited!!! Thanks to the kindness of family, friends and strangers alike, we have raised enough money for Taegan to be able to receive her first 40 hyperbaric oxygen treatments in Cincinnati.

March 19th is the day!!! Taegan has an evaluation scheduled with Dr. Cole and could possibly receive her first treatment that same day!

I will try to provide updated blogs throughout the course of her treatments so that you all can come along on this journey with us (a virtual journey, but nonetheless...)

Thank you to all of Taegan's angels here on earth who have helped make HBO a reality for her! You all hold a special place in our heart.

Every donation was/is appreciated no matter how large or small. Every dollar donated will help make a difference in Taegan's life! But most of all we are THANKFUL...thankful to all of you who made this possible for Taegan!

Please continue to pray for Taegan. Pray that this treatment is the key that will unlock her caged wings... and afterwards she will be able to spread her beautiful wings and soar!

~Blessings of Love and Light~

Dr. Appointment Updates

2007-03-02T12:41:00.000-05:00

(Pictures are from a recent Physical Therapy Session.) Just wanted to post an update about recent doctor visits.

The ENT called last week to say that he consulted with several other doctors and they feel Taegan's sleep apnea isn't significant enough to warrant any further action at this time. He said they feel she should out grow it in 6-12 months. He'd like to see Taegan again in 6 months. I'm not so sure how comforted I am by that answer, since he stated to me that the sleep study was so "wishy-washy" that it really told him nothing. I'm also sure he realizes that insurance will not pay for another $3,300 sleep study until next year, and I surely cannot pay that out of pocket expense! So, that is where things stand with the sleep apnea issue.

The neuropsychology appointment went well. It was basically an appointment for the neuropsychologist to meet with Taegan and get a little bit of background and history on her. They want to set up a 3-4 hour evaluation/test for her in the next month. It could be longer than a month, as I told them we hopefully would be in Cincinnati by then. :-)

The physiatrist suggested we do Botox injections along with serial casting on Taegan's left leg/foot. Her tone is increasingly worsening, as is expected as she grows. The muscles aren't relaxing as she gets taller, which is a typical occurrence in spastic diplegia diagnosis. More than likely, Taegan will need to have Botox injections and serial casting until she is done growing (through young adulthood). Once she's done growing, she most likely will have to "maintain" her muscle tone through the use of Botox injections and night splints as well as wearing her braces daily (AFO's).

I'm hopeful that HBO will alter the course of things, and perhaps make long term differences in Taegan's muscle tone. That has been the case for many other CP children I've come across via research on HBO treatment.

The physiatrist also suggested we move forward with the genetic testing, just so that we have a complete 'picture' of Taegan, and also so we can best help her. She wrote a prescription for a medication that is supposed to help Taegan with her sleep difficulties. It is actually a blood pressure medication, but has been used for it's side effects of drowsiness. I've gone the natural route with little success... so reluctantly, I've agreed to try commercial medications. So far, I haven't seen any improvement with her sleep patterns/habits, but perhaps it needs to build up in her system before it takes effect.

She also wrote a script for another medication to help with Taegan's continuing bowel issues. Hopefully something will give her some sense of normalcy in that regard. Thankfully, Taegan's hip X-rays look fine at this time. She will need X-rays every 6 months to make sure her bones are aligning properly in the hip sockets.

Taegan continues to have eating issues, and at present is eating about 8-10 foods consistently. I worry that having Pop-Tarts for 3 meals a day isn't 'cutting' it... but I've been reminded by several of you that kids just go through these odd stages. I just hope it doesn't last too terribly long.

The recent fundraiser at Chick-fil-A netted $206.59. Many thanks to the wonderful people at Chick-fil-A (Greenwood) and especially to Katy Johnson, who organized the event and made sure everything ran smoothly for us. Also, thank you to everyone who braved the snowy weather to come out and offer support for Taegan.

Thanks to all of you for the recent private donations you've sent to Taegan's fund. I'm thrilled to report that we're about $500 shy of having the full amount for the HBO treatments!!! I spoke with the Cole Center this week and they're all ready for us.... have our insurance info etc. Wonderful news: Our insurance will pay for the consultation and evaluation with Dr. Cole. (it just will not pay for the HBO treatments!) So, we're hoping to be in Cincinnati sometime this month!

Fundraiser Pics

2007-02-22T15:55:00.000-05:00

These pictures were taken last Saturday during Taegan's fundraiser at the Chick-fil-A. The weather didn't cooperate as much as we would have liked until late in the afternoon, but we still had a pretty good turn out. Thank you to everyone who helped make the day a success! We should know the total amount that was raised during this benefit by next week. I'll keep you posted...

Unhappy Taegan (she had little sleep the night before, per her usual!)

Her best attempt at a nap....

Looking out the window with Gramma....She enjoyed watching the cars drive by after exiting the drive-through window.

Later that night, a more happy Taegan appeared....

REMINDER

2007-02-16T04:29:00.000-05:00

Just a reminder... The Chick-fil-A benefit for Taegan is THIS SATURDAY, February 17th. For all the local readers, it is the Chick-fil-A in front of the Greenwood Meijer on State Road 135 and Main Street. We're hoping this fundraiser will generate enough interest/funds for Taegan to finally be able to receive the hyperbaric oxygen treatments this spring!!!! Please help us make that a reality for her! Many Blessings....

Recent Appointments

2007-02-16T03:46:00.000-05:00

Taegan had several doctor appointments recently. Her eye exam went really well. No new changes with her eyes this time around. She still has an astigmatism in both eyes which will probably require glasses in a few years. The ophthalmologist said it was difficult to determine depth perception problems in children this young, and he could probably better test her for that when she was closer to five years old. She doesn't have crossed eyes or a lazy eye, in which depth perception is a problem with both of those conditions typically.

I still think she's having some kind of vision issue because she does not see things on her high chair tray that are closest to her. Also, when she is walking, she fails to see things in her path closest to her, and stumbles over them frequently. For example, if she is walking by the couch and people are seated on it, she will trip every time over their feet, as if she doesn't see them there.

Her Occupational Therapist mentioned the possibility of vision therapy and more vision testing that can be done for children Taegan's age. I'll probably pursue that possibility.

I took Taegan for Xrays of her hips this past week. We should find out the results on February 26th when we meet with the physiatrist.

Taegan's appointment with the ear, nose, throat (ENT) doctor was less successful. The doctor was very nice and personable. However, he was unable to give us any guidance on what the next step should be in remedying her sleep apnea. The sleep study test that was performed on Taegan back in December did not provide enough details for the ENT to determine a course of treatment. The ENT said he would make some phone calls to the sleep lab physicians who read the test results and see if he could find anything more conclusive and then he'd give me a call. Still waiting on that call......

I'm extremely frustrated that we wasted our time on that sleep study, and spent(accrued more medical debt!) $3,300 for a test that failed to provide enough details to determine a further course of treatment for Taegan. I'm even more infuriated that Taegan had to endure such discomfort and distress for no reason...why did we bother having it done if the test couldn't provide adequate details for further treatment options? I'm sure the sleep study test CAN be given in a manner that DOES allow adequate and accurate recorded information that CAN be beneficial in determining a proper course of treatment. Unfortunately, the facility where we had Taegan's sleep study done wasn't able to provide that.

I think I should start a support group for parents of children who require frequent medical care/appointments. Seriously! Two and a half years of constantly seeing specialists and added doctor visits due to prematurity and the plethora of problems Taegan has faced has really been an 'experience,' to say the least! Until you live it, I don't think anyone can possibly understand the frustration it causes and the energy it drains from you. I have often remarked that even though I am not working at the present time, I have been busier and more exhausted than I have ever been, even when I was working full time!

More updates to follow....

Chick-fil-A Fundraiser Scheduled For February 17th

2007-01-31T19:02:00.000-05:00

With your help and your appetite we can raise big dollars for Taegan.

The Greenwood Chick-fil-A on St. Road 135 in front of the Meijer will be having a fundraiser to benefit Taegan on Saturday, February 17th from 6:30am to 10pm.

You may dine in or stop by the drive-thru. Be sure to tell them you'd like the coupon for Taegan's fundraiser if you haven't gotten one from me ahead of time. The cashier will need to write the total amount spent at the bottom of the coupon. Twenty percent of what you spend goes directly to Taegan's Benefit.

Taegan will make an appearance at some point, probably for lunch, and possibly dinner. We'll have to see how she sleeps the night before etc.

Be sure to tell your friends and family to bring a big appetite to make a BIG difference in the life of a child.

Change of Appointment etc.

2007-01-29T02:15:00.000-05:00

Just an FYI: The neuropsychologist's office called last week to cancel Taegan's February 5th appointment. She was to have 2 appointments that day in the same medical facility, one with the neuropsychologist and another with the physiatrist. It's a bit of a drive to their offices, so I had scheduled them for the same day. After a lot of schedule juggling, both appointments are now rescheduled for February 26th.

Taegan's ophthalmologist appt. is still scheduled for February 7th and the ENT Dr. is still on February 8th.

Taegan continues to struggle with her sleeping. Her typical sleep pattern has been to sleep unsoundly for 3-4 hours, and then she will be awake, sometimes for 2 and 3 hours before falling asleep again.

The other night, she awoke with a shrill scream that caused me to bolt out of bed practically before my eyes opened! She was having what appeared to be a muscle cramp in her leg. It was her left leg and she was wearing her night splint at the time. When I got to her, her left leg was tremoring and she was grabbing it. I had adjusted the splint the night before, and increased the tension by one increment. (The tension goes from 1-5.) It is set on 2 presently. The orthotist had suggested I increase it one increment per week. The number 2 setting is only slightly bent, so I was quite shocked that it could cause such a reaction. Of course she should be up to 5 by now, but she had all that trouble with being able to tolerate it because of how sweaty her foot would get. We have special socks that she wears with them that have helped reduce the sweating significantly. But, now it seems there is an issue with muscle cramping.

When I meet with the physiatrist, I am going to ask about Botox injections for her high muscle tone in her left leg. Another mother of a CP child advised me to ask for Valium for Taegan if we went ahead and did the serial casting. She said the muscle cramping was almost unbearable for her son when he was serial casted, and that they had to use high doses of Valium to manage his pain. I just cringe when I hear these stories.... and it makes my heart ache even more for my little girl who has to go through all these painful things. She should be enjoying being a child, and exploring, running, jumping, climbing etc. etc. All the things that healthy 2 1/2 year olds enjoy. I still have faith that one day Taegan will do all those things, and I hope that day comes as a result of HBO treatments.

I have been keeping a food journal for Taegan to see if I cannot identify some sort of 'trigger' for these sleep disturbances, but so far, nothing is jumping out as the cause. It may not be a food cause at all. I'm trying to brainstorm all possibilities. I'm hoping after her ENT appointment, there might be a more clear picture painted....

Taegan has been back on Prevacid for approximately 3 weeks now. It seems to have helped her reflux, although she still is having it, just not as severely as she did prior to beginning the Prevacid.

Some good news.... Taegan started saying "Grandma" and "Grandpa" this week. It sounds like "Gamma" and "Gampa" but it's definitely music to our ears! She also said "Taegan" last week as I was spelling her name for her on paper. I got to "TAE" and she quipped, "TAEGAN!" as if she knew what I was spelling. Perhaps she does!? You never know with her...our little puzzle. I just love her adorable voice when she talks.

In other news... Taegan enjoyed her first 'snow experience' last week. She helped build a snowman with "Gamma" and mommy. Her favorite thing to do was EAT the snow. She loved it, except for when the snow touched her skin...she got really upset a few times when it got on her arms where her mittens weren't covering her skin. It was a hoot watching her trying to walk in her snow boots (as if she doesn't have enough trouble trying to walk in regular shoes w/braces!)
You can view some of her snow pictures on her myspace page, which is: http://www.myspace.com/angels4taegan

Hope everyone is staying healthy and warm this winter!!!

Therapy Update, etc.

2007-01-18T03:10:00.000-05:00

Taegan's therapy meetings went really well this week and last. She again qualifies for services through our states early intervention program, called First Steps.

Her Physical Therapy sessions were increased to 75 minutes per visit, and her Developmental Therapy sessions were increased to 1x/wk instead of 2x/month. Also, Occupational Therapy services will be 2x/month. Nutrition services will stay at 1x/month, and Speech Therapy remains at 1x/week as well. She's still receiving CranioSacral Therapy weekly as well (privately).

For her OT sessions, she will be able to receive that through the same facility where she is doing private Physical Therapy (in addition to First Steps Physical Therapy). She will be able to do hippotherapy during her OT treatments as well, which I am thrilled about, and I'm sure Taegan will be excited, as she absolutely loves having therapy there. She just lights up and participates in therapy so well while she's on the horse.

A representative from our local school district met with me as well and explained a bit about how the special needs preschool program works. Taegan will be transitioning out of the First Steps program in June when she turns 3, and will attend the special needs preschool program beginning in August.

Even though I worked in a special needs preschool setting for 5 years, it is still scary to think about MY CHILD going off to school! It seems like it was yesterday that I brought her home from her month long NICU stay, weighing 5lbs 5oz. Just thinking about how much she's grown brings a tear to my eye.

I'm pleased with how her therapies are going... it's a slow process with Taegan, but I know we'll get there. If we could get her tone issues resolved, I know she'd just take off in her PT sessions. I am anxious to see how HBO treatments affect not only her muscle tone, but her SPEECH as well. I've read many reports about non-verbal children speaking after ONE session of HBO treatment. So yeah, I have high hopes.... but I'm also realistic, and know that if it doesn't happen for Taegan that way, it's ok. It will happen when she's ready and when it's supposed to happen.

It's just so frustrating for me (and I'm sure for Taegan as well) when she cannot communicate her needs. She had a really rough couple of nights this week. One night, she was up crying every few minutes until 7:40am! She kept saying "Owie" and rocking herself in her crib. I tried everything I knew to help her... and nothing could comfort her enough to stop her tears. I asked her where it hurt... where was the owie.... in many different ways. "Show mommy your owie Taegan..." Nothing. "Tell mommy yes or no.. Does your tummy hurt? Does your head hurt?" Nothing. "Touch where it hurts Taegan." Nothing. "Shake your head yes or no Taegan.... " Nada. She is able to shake her head no, but isn't consistent with that unless she adamantly does not want something you're offering or suggesting (meal times come to mind here!)

Since she's started back on the Prevacid(to help manager her reflux) last week, she's developed an aversion to medicines. That includes all flavors of Tylenol. You'd think she was being stuck with a needle or something the way she fusses while getting her to take that Prevacid! It's not even that bad of a taste!

So, now apparently, she associates all 'medicine' with the Prevacid experience, and it's like a full fledged wrestling match trying to get her to swallow it. Oy!! So, here it is, 3am the other night, and I'm trying to get her to take some Tylenol, hoping that whatever it was that was ailing her would be eased with the Tylenol. It didn't seem to help any... It's times like those that I wish I were a mind reader. It's frustrating and tears at my heart to see her in pain, especially since she cannot tell me what her needs are, ever!

We've been working really hard with this in Speech Therapy. Hopefully she'll be able to communicate her needs one day.

I've scheduled an appointment with a pediatric ENT out on the west side of Indy for February 8th. I suspect he'll want to remove her tonsils and adenoids to see if that corrects her sleep apnea. Sedation is so scary, in my opinion... especially for kiddos so young. But if it needs done, we'll do it.

In other news... we're about $1,400 shy of reaching our goal of $4,400 for Taegan to be able to receive the hyperbaric oxygen treatments.

More updates to follow soon....

Upcoming Appointments Etc.

2007-01-06T02:32:00.000-05:00

Taegan has a follow-up appointment with the physiatrist on February 5th. She will be determining if the night splint is effectively controlling Taegan's muscle tone in her left foot, or if we should try a more aggressive approach like serial casting and Botox injections.

Also, she wants to go over past blood work/tests Taegan's had done (birth-present), as she's concerned about a possible genetic disorder. No specific disorders were mentioned, only that there are some that fit the characteristics of Taegan's bowel problems, as well as some of her physical features.

The physiatrist is the doctor who ordered the PH probe and EEG monitoring be included in the sleep study, which of course was not implemented. So, I'm not sure whether we'll have to do these tests separately or not.

I believe I am supposed to be scheduling an appointment with a neurologist for EEG testing as well... Also, hip X-rays were discussed at our previous meeting, but no order was written for it.

She will also have her first appointment with a neuropsychologist this day as well, although I think the appointment is more geared towards the parent. I believe he will be discussing possible behavioral issues that could arise that are characteristic of cerebral palsy diagnosis, and how to best handle them if/when they arise.

On February 7th, she will have an appointment with the pediatric ophthalmologist. She's seen him 3 previous times, all in her first year of life. With Taegan's PVL diagnosis, it is common to have vision problems. Some PVL children have cortical blindness, retinopathy, cataracts, and a whole plethora of other vision issues. Thankfully, Taegan only has an astigmatism in both eyes (as of her last eye appt. at 12 months old).

Taegan hasn't been able to wear her night splint consistently due to the excessive sweating issue. The orthotist ordered two types of special sweat absorbent socks that just arrived Friday, so we will be trying those out and hoping that solves the problem.

Since the last update on December 2nd, Taegan has had another cold and also a stomach virus. She's currently fighting off the beginnings of yet another cold... in the sneezing/itchy nose stage at the present time. I have no idea where the exposure to these illnesses is coming from, as I am careful where I take her during RSV season (October-May). This is the first year we're not living like hermits during RSV season. She doesn't have to receive the RSV shots monthly anymore, thank goodness. They were nearly $6,000 per shot!!! She does have contact with other children and shared toys at the facility where she has her hippotherapy once a week. That could be where she's coming into contact with all these lovely germs... also, her immune system is still fragile, as she hasn't built up much immunity to all the germs that are out there. Other than that, she makes the occasional trip to the grocery store etc. Go figure, I guess it's inevitable.

Overall, she's just not been her normal, pleasant self for about 3 months. She's cranky and just doesn't act like she feels well. I suspect she's having reflux issues again. She continues to have bowel issues, despite being on a prescription medication for constipation for the past year.

She has also struggled with eating, and has progressively gotten more finicky with what and when she will eat. Most days, I rely on the Pediasure supplement to meet her nutritional requirements.

At Taegan's two year pediatrician visit, she weighed 26 pounds. Six months later, she has only gained a few OUNCES. She is in the bottom 25th percentile for height and weight for her age.

In mid December she was re-evaluated by the nutritionist/dietitian and again qualifies for services. She will be seen once a month.

Taegan's sleep hasn't improved... she continues to sleep for 2-3 hour stretches most nights, and is then up for hours at a time. She just lies in her crib babbling and crawling around, and singing to herself, with an occasional holler here and there. Most days, she refuses her nap. I still make her lay down for one, and get her up after 90 minutes if she's not sleeping. I don't understand how she can be so tired, and yet not sleep! This is something I will discuss with the physiatrist again in February. (as I type this entry at 4:03 AM, she has been up for the past 70 minutes. She didn't fall asleep until close to midnight tonight as well...so there's her 3 hour stretch!)

The lack of sleep is carrying over into all of Taegan's therapy sessions. She is so tired, she is not wanting to participate. She's also very grouchy as a result... which I understand, because I am too when I am sleep deprived. So, overall, Taegan and I have been a pretty grumpy duo.

January 11th Taegan will be re-evaluated by the Occupational Therapist, Physical Therapist, Developmental Therapist, and Speech Therapist by the early intervention team here in our state. This is to make sure she still qualifies for services (which she's entitled to until she is 3 yrs old.) She will definitely qualify for services, as she's still very delayed in all areas. They call that "globally delayed."

On January 17th, all of her current therapists and her therapy service coordinator will meet with me and discuss the results from the evaluation the week prior. We will then write new goals for each therapy, and a time line in which we hope they will be achieved. Also, a teacher from the school system will be coming out to the house to discuss placing Taegan into the special needs preschool program in our district for August, 2007.

I think that's it as far as upcoming appointments are concerned... Hopefully the ENT appointment will be before February!!!

Sleep Study Ordeal & Results

2007-01-06T00:31:00.000-05:00

Hello everyone... Hope you all had a wonderful holiday season and that many blessings come your way in 2007. The holidays have kept us busy, so my apologies for not keeping this site better updated.

Taegan finally had her sleep study at the children's hospital (which shall remain nameless) here in Indianapolis on December 19th. It was one of the most terrible medical experiences I've been through with Taegan since her NICU days... Suffice it to say, I will be writing the CEO of the hospital a detailed letter explaining why I will not be returning to their hospital for future medical care for my daughter.

It isn't just this particular experience I will be referencing, but every appointment, every hospitalization, and every encounter we've ever had with this hospital has been an unpleasant experience. I know you're thinking, "How can any trip to the hospital be a 'pleasant' experience?" I'm referring to the way we were treated, the professionalism, or lack thereof, and overall competence/incompetence.

When we arrived, they acted as if they had no idea we were scheduled to be there. No surprise there really, since they canceled our previous appt. 40 minutes before it was supposed to start, saying they had 'overbooked' the sleep lab that night.

When I called to reschedule, they scheduled me on 2 different nights while on the phone, changing between the two dates several times before deciding on the date. What is that all about!? They were also not very nice about me having to reschedule it, when it was their mistake for overbooking.

Well, unfortunately, Taegan caught a bad cold the week of the rescheduled sleep study, and *I* had to cancel that appointment. I rescheduled at that time as well, and again was given 'attitude' for canceling.

The lady on the phone remarked, 'How many times have you canceled now?' I should've gotten a clue and just said "Never mind...we'll go somewhere else." But I wasn't aware of any other hospital that did sleep study testing on pediatric patients aside from the children's hospital.

So, they found us a room, and told me to dress Taegan in her pajamas and put her in the crib. As I was dressing her, I noticed the sheets on the crib were soiled! They had what appeared to be dried mucous on them!

Twenty minutes later when someone returned to the room, I requested clean sheets be put on the crib, and pointed out the soiled spot. The employee did not change the sheets, but folded them down and tucked them under the mattress. I think my eyes were the size of saucers...

She said it would be fine... I said "I don't want my daughter sleeping on dirty sheets. She still puts everything in her mouth!" The lady assured me that she wouldn't be able to get the sheets in her mouth because she wouldn't be able to move around in the bed. What!? How was that an appropriate answer?

The night progressively got worse from here...

Taegan was supposed to have a PH probe test(measures acid reflux) as well as an EEG (checks for seizure activity) during the sleep study testing. I faxed the order to the sleep lab 3 weeks prior to our appointment, and even called to verify that they received it. The night of the study, there was no PH probe placed nor was their an EEG performed.

I questioned the person running the sleep study (I have no idea if she was a nurse or a technician, as she wore no name tag and did not identify herself... in hindsight, I should've asked for her name as well as the other rude people I dealt with that night!) and the lady assured me that "The most comprehensive tests will be performed on your daughter during the sleep study."

Well, that's all fine and good, but, where is the PH PROBE?? She tried to tell me that the "nasal cannula" would be placed in her nose last (as she was hooking up all the other wires, this conversation was taking place.) I suppose she thought by throwing out some medical terms like 'nasal cannula,' it would reassure me that they've got it all under control and that they know what they're doing. Unfortunately for her, she didn't know that I work in the medical field and am very well aware of what a nasal cannula is and also what a PH probe is and how it is to be inserted into the nose.

I questioned her further, and she simply stopped talking to me! I showed her the prescription that I had in my possession stating Taegan was to have a PH probe as well as an EEG and explained that it had been faxed 3 weeks prior... she just said that they have all the information they need, and all the tests were going to be run. I then told her I wanted to speak to whomever was in charge. Again was ignored...

All the while, Taegan was being hooked up with electrodes and being wrapped up like a mummy. The only thing you could see on her face was her nose and eyes. No cheeks, no chin, no ears, no hair etc. They put 'angel wings' on her arms that prevented her from bending them at the elbow so that she couldn't pull the wires off. This made Taegan extremely upset. I did my best to calm her, stroking the bridge of her nose..as that was the only exposed skin on her face!

What followed were several hours of crying... and coughing, and more crying... She cried so much that she was becoming congested in her lungs from all the mucous draining, I'm sure. Taegan was so exhausted before the test even began, I thought for sure she'd sleep despite being wrapped up like a mummy. No... she just kept crying... wouldn't keep her pacifier in her mouth, or take any milk etc. I tried singing to her etc. Everything I could think of to comfort her (as I could not hold her... she was in a 'crib' which looked rather like a cage, and I couldn't fit my arm through the slats.) I tried ignoring her... figuring she's got to stop crying at some point! (This began at 9pm by the way.)

Eventually, they asked me to step out of the room, and wait outside. So I did. There was a chair sitting out there, so naturally I sat there. Twenty minutes or so passed, and after several unusual stares from various staff members, I was asked to leave the area. I was told I couldn't sit there (even though there was a chair there.. I guess for decoration, I don't know!?) because of patient confidentiality. Okay?! I simply did what I was told... to wait outside the room..

They shuttled me off down the hall to the 'parent lounge.' I said I did not wish to sit in there, I wanted to stay in the room with my daughter. (They even tell you that you can sleep in the room with your child, and there is a fold out chair bed in there for the parent to sleep on). They said they felt Taegan would do better if I wasn't in there. They told me I could sleep in the lounge. I declined, and said I wanted to be notified when she was asleep, and at that time I would go back into the room to sleep there. This was 10:50pm.

At 1:10am, one of the lab workers came into the lounge and seemed to be irritated. She motioned for me to come with her, and I asked what was wrong. She told me that Taegan would not stop crying, and they needed me to calm her down. I asked if she'd been crying this whole time, and she said "yeah, pretty much." Nice.

Before I even entered Taegan's room, I could hear her crying and saying "Mommy! Mommy!" as she cried. (She rarely does this... only when she has a belly ache or something is wrong do I ever hear her cry my name.) I went to her side and slid the railing down and she tried to reach for me, but couldn't because of the straps on her arms. I just leaned down close to her and held her hand and stroked the bridge of her nose and told her it was ok...

Every cell in my body was screaming at me to just take her out of that hospital right then and there... I should've done it when they were first hooking her up and realized there would be no PH probe or EEG, and no one would even talk to me about it... I don't think anyone was even "in charge" there! If I learned anything from this experience, it is to trust my instincts. Also, to be more assertive, and to not be so nice while being assertive.

I must have stood there by her bed for an hour or so.. there was no clock in the room... but she finally fell asleep while I stroked her nose bridge. She slept off/on, waking every 20-30 minutes to cry for a few minutes until I calmed her again, reassuring her I was right there. In my estimation, she probably slept 90 minutes to 2 hours during the whole study, and not continuously.. as she would wake every so often as I described above.

At some point I fell asleep (and actually had a nightmare while sleeping...and that rarely happens to me!)

"TIME TO WAKE UP! YOU'RE ALL DONE!!!" is what I heard at 5:30am while bright lights from above blinded me. I lurched up out of the chair bed clutching my heart... Taegan started crying and was trying to cover her eyes but couldn't. I replied "Well that's a nice way to be woken up..." and was ignored.

Then the lady (technician? who knows!) started unwrapping Taegan's head and started yanking off the electrodes... I say yanking because that is what she was doing! I couldn't believe how rough she was being. I even told her I would take them off and put my hand on hers as a hint to make her STOP!!!!!!!! She didn't stop, but allowed me to assist.

Then she says, "You're going to take her home and put her in the shower, right?" I knew what she was implying... she didn't want to have to wash all the goopy gel/glue out of Taegan's hair and off her face.

I said, 'I cannot take her outside with this in her hair, it is too cold, and it will get all over her coat and her hat and the car seat. Just give me the shampoo and a towel and I will do it." and she gave me a look like I was being a pain in the ass, and said, "No, I can get her washed up, it's not a problem." Really...

So then she starts scrubbing Taegan's head with a wash rag and soap, and Taegan's whole head is bouncing all around because she's scrubbing so hard. Taegan, who as many of you know, is very even tempered and good natured, grabbed this lady's hand and pinched it real hard. I didn't have the heart to tell her NO, because I didn't blame her one bit! That is the first and only time I've ever seen Taegan react that way to anyone, even play mates! Other kids have taken toys away from Taegan etc. and it doesn't phase her... she's an easy going kid. I didn't know my child had it in her... so in a weird way, that was good to see.

After the pinching incident, I took the wash rag and soap and told the lady I'd finish the other side of Taegan's head. And I did. And we left... not even a goodbye.

I was so exhausted and emotionally drained... Taegan cried all the way out to the car, and looked worse than I felt(red face and eyes all puffy). We cried together on the ride back home at 6:30am. and I worried that I might have scarred my daughter for life with that experience. I pray she doesn't remember it... My earliest memory is around the age of 3, so I can only hope she wont remember this terrible experience.

She's been more clingy to me since then, and also gets upset when I leave her at Grandma & Grandpa's (if she realizes I'm leaving or I've left). Could just be her age... I hope anyway!

I called her pediatrician for the test results this week and it turns out she does have sleep apnea. So, the next step is to get her into an ENT (ear, nose, throat) doctor. The pediatrician scheduled us for an appt. at the same hospital as the sleep study was done in, and I am going to cancel that appt. on Monday and find another ENT. Nothing against the Dr. they have chosen, it's the hospital.. and just yesterday I heard that several people have had terrible experiences at the ENT clinic in this hospital. I'm not even going to waste my time...

I'll be sure to update this site once she's been seen by the ENT. Hopefully we can get this apnea under control/fixed before too long, as it can be dangerous.

Thanks for everyone's thoughts and prayers.

Download Christmas Music To Benefit Taegan

2006-12-21T02:49:00.000-05:00

Two wonderful earth angels of Taegan's, Jan Pulsford and Charles Green, have generously made several of their Christmas tracks available for download until January 6th, 2007. The idea is to download and donate. We are grateful for every dollar donated, whether you donate $1 or $10 etc. per song, all proceeds will go to Taegan's fund.

The Christmas music can be downloaded here:
http://www.musicallmusic.com/angels4taegan_music/

To hear more tunes from the talented Jan Pulsford, click here:

http://www.myspace.com/janpulsford
or click here:

http://www.myspace.com/athenablue

To hear more beautiful music by Charles Green, click here:

http://www.myspace.com/happycharlesmusic

Thank you to all of Taegan's angels here on earth, and happy holidays...

Parent Testimonials

2006-12-18T02:34:00.000-05:00

These parent testimonials have brought me so much hope and excitement that Hyperbaric Oxygen Treatments could help Taegan as well... that I keep re-reading them every few months, when hope starts fleeting.

I re-read them tonight because I needed that 'boost' again... Taegan's spasticity has become worse over the last 2 weeks, possibly due to her having the flu. When she stands, she is completely up on her tip toes on her left foot. It has become difficult yet again to even get her brace to go on her foot. She hasn't been able to wear her night splint for longer than 2-3 hours at a time these past 2 weeks as well. Serial casting is likely to happen in February, perhaps sooner if her spasticity keeps worsening. I'm so anxious to get her the HBO treatments, so maybe we can avoid the whole issue of CASTING altogether!!!

Many of these testimonials below mention how HBO took away their childs' spasticity. Also, they talk of how their children became verbal and began speaking in sentences etc. Just the thought of Taegan being able to talk to me brings tears to my eyes... If I had a Christmas wish, it would be for Taegan to receive the HBO treatments... and all the other things would fall into place... I just know it!

Testimonals taken from this web site: http://miraclemountain.homestead.com/HBOTforCP.html

Hi everyone:
I had to post this tonight. Today Michael and I were at his private OT appointment. I had previously spoken with his OT about the possiblity of us doing HBO and she informed me that the kid that she sees ahead of
Michael was currently in Canada receiving treatments. Well, today was Katie's first day back after 120 treatments. All I can say is that HBO is truly a
miracle. This little girl is 5 years old. Previous to HBO, she did not walk, talk, communicate or really do much of anything else. As her mother expressed to me today, she was pretty much in a vegetative state. She was full-term, suffered a stroke inutero, has pretty severe CP. Well, she is now walking, talking, running, playing, you name it. I could not believe it! I was so very glad to see this with my own eyes! And, her mom attributes all of this to HBO. How is that for a success story!
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
I am a pediatrician who has a four year old daughter with severe cerebral palsy. She has been receiving physical and occupational therapy from the age of 6 months. At the age of 3 she could not sit up unsupported. She was able to say about 35 words with difficulty. She screamed whan she was hungry and would say "miek" when she was thirsty. A distant relative had suffered a stroke which left him completely blind. He was able to regain some vision after hyperbaric oxygen therapy. He called me to tell me that he saw children like mine at the center and encouraged me to take my daughter there. I procrastinated because I wanted to see if there was any data that showed HBOT would work. I then finally enrolled my daughter in a study. Within the first week of HBOT
treatments my daughter was able to say "Boos Coos" pertaining to "Blues Clues" a children tv show and incredibly she did for 45 minutes. For me that was a small miracle. She had never focused enough before to watch a tv program. With the completion of 80 treatments, she speaks well over 1000 words and can say 4-5 word sentences. She can indicate her needs and is completely toilet trained. Currently she continues to make improvments daily. I have noticed that when she is receiving treatments she appears to be more and more focused and is able to learn much more. I personally believe that HBOT has made a huge difference in the quality of her life and ours. I believe in it so much that
I wanted to make this treatment available to other children and families. My new facility Hudson Valley Hyperbarics in Brewster, NY has the capability to treat all kinds of CP cases and medical conditions. Please feel free to contact me via email PINAMD@aol.com to discuss any of your childrens or families conditions.
Sincerely,
Jo Feingold, M.D.
Medical Director Hudson Valley Hyperbarics
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Hello everyone,
My name is Kim, my daughter is Gabriella, (www.gabbyrose.org). Gabby is 5 yrs old and was injured by the Hep B vaccine she recieved at one day old. She was diagnoised with static encephalopathy, global developmental delay, cerebral plasy, PDD, leaky gut, ect, ect, ect. She has had over 120 HBOT. This
wonderful therapy is like a miracle for her. She is now able to drink thru a
straw, eye contact improved, gross motor and fine motor skills improved, she can get into a standing position by herself, her balance has improved greatly, she can walk unassisted in the grass and other surfaces, she is climbing on the
furniture and the kitchen table! She is starting to perspire like a normal
child, she initiated and said new words, she is making more sounds and is trying to sing, dance and jump. I was wondering if there is a way that you know of to share information about this fantastic treatment. There are soooo many children and adults who can benefit from it. Has anyone written editorials for the newspaper or found another way to really get the word out about this treatment. It seems it is usually the last thing people try and sometimes parents are so involved with just managing their children and their circumstances that they don't have the time to research this option. If we could really 'go public' (major newspaper, TV, radio) with this, it would make it more available to people and the more people ask for HBOT, perhaps this will push insurance companies to cover the 'off label' diagnoises that can so benefit from HBOT.
Any ideas?
Thanks,
Kim Waldele
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We just returned home from a doctors appt. We have been seeing the
opthamalogist before and after each 40 sessions of HBO. This is Patrick's 3rd
set of 40 to complete. Here are his documented results:
1st 40: Cortical blindness upgrade to high use of peripheral vision amd
severe cortical impairments in all central fields of vision
2nd 40: Went from strictly liquid diet to 3 meals aday. Gained 15lbs. grew
8'' in 1 10mths following. End of all gastric issues, removal of GI tube, and
all medication.
3rd set: Eye doctor said "Patrick no longer need to wear his glasses, 60%
improvement since Dec.2000 in farsightedness, normal focusing, responses all
normal in all tests!!!!!!!
Currently we are fundraising to finance the next set of 40 treatments. HBO
has been nothing short of a miracle for Patrick! I hope to hear from others
about their experiences. Jacki mom to Sean 11, Kathleen 8, and Patrick 4 our
vaccine injured angel.
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We have done nearly 100 treatments. We did a set of 40, doing two a day for
20 days with one two-day break in there. We saw amazing results. Bethany was
8 at the time. She had just had a shunt blockage, a very bad one and was not
walking, talking, anything. After the forty treatments, she was walking again, better than ever and had begun talking in sentences (before she had only one or two word sentences). We saw incredible results with her sensitivities- she was able to stand a lot more noise, confusion, etc. without a meltdown. A few months later we did 20 more sessions, two a day for 10 days straight. This time, we saw more lessening of the sensory problems. She went from a child who could not stand to have her hands touched, to a little girl who wanted her nails painted! We later did 10 sessions, and saw no gains- I would not recommend doing only 10 at a time. We did 20 more later and saw more decrease in spasticity and more cognitive gains. Before we ever started treatments, I checked with our pediatrician about possible side effects. He assured me that HBOT is 100% safe- he also is a non believer in it, but can't deny the benefits we have seen from it!
********, mom to ********,10, spastic diplegia, hydrocephalus, CVI, optic
nerve atrophy, seizures and autism and *******, 12, nda from Alberta Canada
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My daughter is 16 months old and I have recently finished 40 HBO
treatments. She had increased tone in her legs and low tone in her trunk.
Now, the PT has stated Anna Kate has lost the tone in her legs. She is now
sitting unassisted, will transfer from sitting to crawling and return to a sitting position. She is pulling up and can ambulate slowly behing a push toy ,however, balance is still a problem in standing upright position. She
now plays with toys without releasing them, is much more curious, claps
hands, motions bye,bye. Before HBO, she had to be propped in sitting position, could not hold toys without releasing them and she appeared sleepy and tired much of the time. I am amazed at the results we have seen.
We are taking a break presently but will return in about a month for more
treatments.
K******

Taegan Update

2006-12-02T02:35:00.000-05:00

Hello everyone! Just wanted to update you on how things are going. We're just shy of reaching the halfway mark on our fundraising goal of $4,400 for Taegan to be able to go to the Cole Center For Healing in Cincinnati. Thank you again to everyone who has donated to Taegan's fund.

Taegan was sick twice during the month of November.... both times with colds. Thankfully, her regressions haven't been as significant as they have been during past illnesses.

She is scheduled for a sleep study at the children's hospital on December 19th. The previous two appointments were canceled, once due to the lab over booking patients, and the most recent cancelation due to Taegan's illness.

Taegan is still adjusting to the night splint... it makes her leg/foot very hot and sweaty (and probably makes it uncomfortable), but this week she has been able to keep it on all night long for the past 3 days.

Sleeping has been especially challenging for Taegan for the past 6 weeks. I'm not sure what is causing this disturbance in her normal sleep pattern (usually she will sleep for 4-5 hour stretches and then awakens.) In recent weeks, she sleeps 2-4 hours and is up for 3+ hours before falling back to sleep. She has been quite grouchy and appears sleepy much of the time, and yet will not fall asleep! She's gotten some relief while taking Dallergy to help with congestion, as it makes her drowsy. She has been able to sleep 5-6 hours while taking that medication.

Last week, I took Taegan for an appointment with a physiatrist. A physiatrist is a medical doctor who specializes in the area of physical medicine and rehabilitation. It was a very informative meeting for me.

The physiatrist has recommended we meet with a neuropsychologist as well. They will be calling me to schedule the appointment for the beginning of the year.

The physiatrist has asked that I track down all of Taegan's blood work records from the NICU to present day. She is concerned that Taegan may have a genetic syndrome that is linked with a flat nose bridge and difficulty with bowel habits. This isn't the first time a 'genetic syndrome' possibility has been discussed. Taegan's GI specialist sent her for chromosomal testing in 2005. Those tests came back negative. I am not sure what the test was called that they gave her, so I especially need to track that one down so it is not repeated ($$$$!!!!)

The physiatrist also mentioned the possibility of serial casting in a few months, if the night splint and her day time braces do not help to improve the flexibility of her left foot/ankle. Also, she is concerned with Taegan's hips... her legs appear to be internally rotating (giving the appearance of pigeon toed walking etc.) She mentioned a device that goes on like a belt and has several straps that would go down and around Taegan's legs that would pull her legs out of the inversion and align the head of the femur bone into the hip sockets better. Before this device might be ordered, the physiatrist has asked that we have Taegan's hips X-rayed again to rule out dysplasia and some other abnormalities. Taegan's X-rays when she was 13 months old showed no signs of dysplasia at that time. She said that it was important to have hip X-rays done every 6 months until Taegan's 5th birthday.

The physiatrist has also ordered a PH probe be placed down Taegan's throat during the duration of her sleep study on December 19th. This is to determine whether she is still suffering from reflux, as this could be a possibility for her sleeplessness and irregular sleep patterns. Also, she has ordered a EEG be performed during the sleep study as well. This will show whether Taegan is having seizures during sleep, which also could be disrupting her sleep cycle/pattern.

It was reassuring to hear the physiatrist speak of how other parents of CP children complain about sleep issues. Apparently, the CP brain has difficulty transitioning from one activity to another and also isn't able to recognize the cues for upcoming transitions. She explained we have to train the brain. We are to create a schedule. For example, before Taegan's bedtime, we should do the same activities every night in the same order. So, we will have a bath, brush teeth, read a book and go to bed. This is to be the same pattern every time, so that her brain is trained or 'cued' when to begin to calm down and prepare for sleep.

The physiatrist mentioned that many CP children require medication for sleep, as their brains simply cannot fall into this pattern to settle down enough to sleep. I had been trying melatonin with Taegan since the summer time, and it seemed to have little effect. The physiatrist mentioned that I probably wasn't giving her a high enough dosage, as CP brains require a much higher dosage to be effective.

The increased dosage has seemed to help, but it doesn't keep her asleep. It just helps her to fall asleep. At least with the melatonin, she doesn't lay in her bed for 2+ hours babbling and squirming around as she had been.

We are also supposed to be making an appointment with a new neurologist so that he/she might be able to explain the MRI results to us better as well as look into the concern of absent mal seizures (petit mal seizures.)

Taegan continues to do well in her therapies. This week she finishes up her fall session of hippotherapy down at PALS in Bloomington. She will begin sessions again in the spring. She will continue her hippotherapy in Carmel at TherAplay throughout the winter, as it is a heated, indoor facility. She absolutely loves the horses. It brings me great joy to see her smiling and clapping while riding the horses. She is very vocal afterwards as well. I think there is magnificent healing that occurs between animals and humans... I'd love to one day take Taegan for dolphin assisted therapy. (It actually has always been a dream of mine, to become a dolphin assisted therapy therapist!)

The nutritionist/dietitian will be re-evaluating Taegan on the 14th due to weight loss and difficulty with eating over the last 2+ months. Taegan refuses foods she previously has devoured (i.e. spaghetti, macaroni & cheese, peaches, pears, carrots.) Her diet mainly consists of oatmeal, Nutra Grain Cereal bars, green beans, mashed potatoes and Teddy Grahams. On any given day, she may refuse even these foods! She prefers a liquid diet, so I've been increasing her Pediasure supplement daily.

Taegan has noticeably become more frustrated with her inability to communicate effectively. The speech therapist has commented on this as well. We've tried sign language and augmentatives (pictures) and so far haven't had much success. We're discussing the possibility of button switches, where she can press a button and a pre-recorded message (by whomever, mommy, daddy, grandma etc.) will talk for her. I'm hoping this will help with Taegan's feeding issues. Hopefully it will allow her to communicate a choice of what she wishes to eat at meal time. Simple pointing between two choices of food has not worked. It just breaks my heart when she becomes so frustrated.

I hope we can get her to the Cole Center For Healing in early 2007... perhaps many of these issues will be resolved as a result. We can only hope....

Night Splint

2006-11-06T19:06:00.000-05:00

Great news! Taegan's night splint for her left foot is finally finished! Finding pajamas with an enclosed foot that would fit over the splint proved to be futile, so we're going to try putting a large sock over the splint, in the hopes that she will be unable to remove the splint at night.

She is to wear it every night to bed. It is supposed to help prevent muscle contracture of her left foot/ankle. If a contracture were to occur, there is nothing that you can do to correct it. Her foot would be 'stuck,' or contracted in one position forever if that were to happen.

The orthotist said her foot had lost range since the last time in the office (approximately one month ago), so it appears we got the splint just in time!

Wish us luck with Taegan being able to tolerate it and leaving it on all night long! She is such a restless sleeper, I imagine it might be a challenge until she gets used to it.

In other news, Taegan's pediatrician is scheduling a sleep study for Taegan sometime soon (we're waiting on a phone call to tell us when/where etc.) As most of you know, Taegan had apnea shortly after her birth, and had to wear an apnea monitor until 12 months of age. We had thought that was mostly due to her issues with reflux, but it seems that it might be unrelated at this point. Many times during Taegan's times of sleep, I will hear her gasping for breath over the baby monitor. So, I'll sleep easier once that is resolved.

Taegan's new AFO's are working out well for her too! She hasn't even attempted to take them off yet! Amazing!! I'll take some pictures with her wearing them and post them soon.

Much love to all of Taegan's earth angels......

A Special Earth Angel ~Mary VanNoy~

2006-11-01T18:38:00.000-05:00

Taegan has been receiving craniosacral therapy treatments once weekly from Certified CranioSacral Therapist Mary L. VanNoy of Essence In Harmony, part of Sacred Space Healing Center in Greenwood, IN. Mary lovingly assists Taegan on her journey toward living free of dis-ease and releasing restrictions in the craniosacral system. Taegan just loves Mary and showers her with hugs and kisses!!!

I'm a firm believer in CranioSacral therapy... as a practitioner myself, I've seen many people go on to live pain-free lives after regular CST treatments.

If any of you are interested in this wonderful, non-invasive therapy, I highly recommend you seek a treatment from Mary. She can be reached via phone at 317-727-6420 or by email at mvnhealth@aol.com . Her office is located at: Sacred Space Healing Center
2801 Fairview Place
Suite K
Greenwood, IN
46142

Below is a brief description of CranioSacral Therapy as well as some of the conditions it is used to treat.

CST was pioneered and developed by osteopathic physician John E. Upledger following extensive scientific studies from 1975 to 1983 at Michigan State University, where he served as a clinical researcher and Professor of Biomechanics.
CST is a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.
Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the functioning of the central nervous system.
By complementing the body's natural healing processes, CST is increasingly used as a preventive health measure for its ability to bolster resistance to disease, and is effective for a wide range of medical problems associated with pain and dysfunction, including:

Migraine Headaches
Chronic Neck and Back Pain
Motor-Coordination Impairments
Colic
Autism
Central Nervous System Disorders
Orthopedic Problems
Traumatic Brain and Spinal Cord Injuries
Scoliosis
Infantile Disorders
Learning Disabilities
Chronic Fatigue
Emotional Difficulties
Stress and Tension-Related Problems
Fibromyalgia and other Connective-Tissue Disorders
Temporomandibular Joint Syndrome (TMJ)
Neurovascular or Immune Disorders
Post-Traumatic Stress Disorder
Post-Surgical Dysfunction

Taegan's Angels

2006-10-27T14:31:00.000-05:00

Dora Anderson
Arlington Elementary PTO
Arlington Elementary Staff
Alan & Natalie Armstrong
Scott & Lori Armstrong
Annette Ashbrook
Don & Carol Augsburger
Jeff & Cara Ball
Brooke Barber
Barry & Tammy Bentman
Chad & Julie Bertel
Carol Bledsoe
Anton & Dawn Blender
Blue Haven Pools & Spas
Jennifer Bryon
Kathy Burlingame
Ruth Carpenter
Christian Cinque
Kathy Cleaver
Combs Chiropractic
Richard & Susan Colclesser
Paul & Clara Crosby
Lillian Davis
Penny Day
Mitch & MaryLu Davis
Dan Dobbs
William & Linda Dreibelbis
Eagles Club of Fairfield, OH (Men's)
Eagles Club of Fairfield, OH (Women's)
Mary Ann Ernstes
Ronna Flynn
Caleb France
Adina Francis
Lori Gilley
Niki Glover
Charles Green
Tracy Guilbeau
Erika Hackman
Tammie Lee Hall
Donna Hale
Dean Hicks
Kim Hobson
Kathy Huffman
Lucy Jakad
Debbie Jack
Katy Johnson & Chick-fil-A (Greenwood)
Karen Kamman
Judy Kirkland
Wilda Kruzinski
Calley Kuczek
Don & Laurie Leone
Christine Lindstrom
Mary Ann Mack
Patti McCullough
Edie McDonnel
Pat & Sandy McFarland
Ruth McGregor
Jerry & Kim Midkiff
Sherry Mirowski
Terry & Julie Morris
Kelly Mortimer
Richard Oakland
Tom & Debra Partridge
Terri Pedigo
Christina Proffer
Jan Pulsford
Nancy Puorro
Lisa Reynolds
Wendy Robinson
Jamie Ross
Paula Ross
Karen Harrell-Rudolph
Linda Salfer
Mark & Darlene Schofield
Beth Small
Janet Smith
Patricia Smith
Scott Smolin
Karen Spangler
Tootie Stewart
Laura Stewart
Elaine Taylor
Mark & Carla Thill
Great Grandma & Grandpa Thorpe
James Townsley
Teresa Tuchek
University Heights Health and Living Center
Mary VanNoy
Eric & Trish Visa
Jean Wehling
David & Eleanor Windisch
Mary Kay Woolsey
Kim & Jeff Wright
Yard Signs Inc. (Owner: Tracey) 736-SIGN

Raffle To Benefit Taegan

2006-10-14T19:50:00.000-05:00

The Eagles Club in Fairfield, OH is having a raffle on October 28th, with proceeds benefiting the Angels4Taegan Fund.

Many thanks to Cara and Jeff Ball for donating items for the raffle. They have been instrumental in raising awareness for Taegan's cause throughout their community in Ohio. The Cole Center for Healing is located a few miles from their house! They have graciously opened their home to Taegan and I when the time comes for Taegan to be treated there. :-)

Local Newspaper Published Taegan's Story

2006-10-14T19:10:00.000-05:00

Our county newspaper, The Daily Journal, published an article on October 9, 2006 about Taegan and the portable hyperbaric oxygen treatment chamber that we were allowed to use at our home for a few weeks. Below is an abbreviated version of the article. Photos taken by Scott Roberson.

By CANDACE BEATY Staff writer Oct. 9 ,2006

When 2-year-old Taegan McFarland crawls into the treatment chamber in her Greenwood home, it's called a tent. For her mom, Michelle McFarland, it's a machine that could help her little girl lead a more normal life.

Hyperbaric oxygen treatments are often used by athletes to speed recovery from injuries and by people with diabetes. Taegan uses it to treat her cerebral palsy.

The machine increases the barometric pressure inside the chamber, which allows a higher level of oxygen than the air we breathe to be pumped in.

The portable machine reaches a 37 percent level of oxygen, encouraging blood flow, McFarland said. Regular air contains 21 percent oxygen.

The treatment allows more oxygen to reach more areas of the body, she said. The increase in oxygen allows dormant cells in Taegan's brain to became active.

After 11 one-hour sessions in the machine, McFarland said she could see considerable improvements in Taegan, who is 12 months to 15 months behind her peers developmentally.

Taegan may squirm a little as she crawls into her tent, but once inside she enjoys looking at her picture books, McFarland said.

The chamber is just large enough for McFarland to accompany her daughter to make sure she is OK. McFarland lies on her stomach while Taegan sits up at one end.

Taegan's type of cerebral palsy causes her to have stiff muscles in her legs. She wears leg braces to help get her feet flat on the ground, because the stiffness causes her feet to point straight down.

Her type of cerebral palsy also is linked with periventricular leukomalacia, which causes swelling in parts of her brain.

Taegan undergoes various physical therapy treatments weekly. Her mother said Taegan has faced developmental problems since complications led to her birth two months early.

When Taegan's doctors said she had cerebral palsy in August, McFarland started researching online for different treatment options. That's when she found information about the treatment, which she said many of Taegan's doctors knew little about.

Before Taegan started using the treatment, she would only take a few steps. Now, she walks across the living room, McFarland said. Taegan also started trying to talk more.

Her physical therapist, Joanna McGill, has noticed changes, too.

Taegan gained movement in her left ankle, her biggest problem area, McGill said. Before the treatments, Taegan would scream and cry when doing stretches on her legs. Now, Taegan has become more comfortable with the stretches and can put both heels on the ground, McGill said.

Despite the treatment's apparent success, McFarland said insurance companies don't cover the process. Hospitals also don't use it the treat cerebral palsy.

Since McFarland couldn't afford the treatments, she started saving money and looking into fund-raisers. A complete treatment of 40 one-hour sessions will cost at least $4,000, she said.

"You're just willing to try anything you can to help your child be the best they can be," she said.

Before she could raise enough money to fund the treatments, a friend's acquaintance heard about her plight and lent a portable machine for Taegan to use.

"It was divine intervention from God that brought it to me," McFarland said.

A friend knew someone in Ohio who bought a chamber for his wife to treat her diabetes. The friend asked if the McFarlands could come to his house and use the chamber.

Instead, the man allowed the McFarlands to keep it for three weeks.

The treatment can be done with portable chambers or at some hospitals. The hospitals' chambers are larger and fill with 100 percent oxygen, compared to the portable chamber's 37 percent.

The McFarlands returned the chamber to its owner Saturday. Now, McFarland is looking for ways to continue the treatments.

Taegan used the chamber 11 times, less than half the length of a usual treatment.

McFarland started a couple of Web sites hoping to find someone to help pay for the medical bills.

Michelle and her husband Shawn McFarland have struggled financially since she was put on bed rest during pregnancy and had to quit working. With medical bills that insurance wouldn't cover piling up, Shawn works two jobs to make ends meet.

While various treatments have helped Taegan, it's too early to tell what development problems she may face, Michelle McFarland said. She may face vision and hearing problems, continuing developmental delay or seizures.

McFarland hopes she can continue the treatment for Taegan while she is young. Since her body is still developing, treatments before the age of 5 will be the most effective, she said.

"I have high hopes that this will help her so it lessens her physical limitations," she said.

AT A GLANCE

What is hyperbaric oxygen treatment?

The treatment consists of placing the patient in an enclosed chamber with increased atmospheric pressure and a higher oxygen level. The portable treatment chamber Taegan used raises the oxygen level to 37 percent. Chambers at hospitals or treatment centers are filled with pure oxygen.

The increased oxygen allows areas of the body that don't usually get a lot of oxygen more access to it. The increased oxygen helps decrease swelling, encourage blood flow and promote new blood vessel growth.

Who uses it?

At hospitals, the treatment is used to treat carbon monoxide poisoning, exceptional blood loss, cyanide poisoning, burns and some other conditions.

Elsewhere, the treatment is used to treat a wide range of conditions, including cerebral palsy, strokes, multiple sclerosis, heart attacks, fatigue, attention deficit disorder, autism, cancer and sports injuries.

For cerebral palsy patients, the oxygen helps decrease swelling in the brain and helps more blood reach it.

SOURCES: Michelle McFarland and The Cole Center for Healing

Divine Intervention & The Kindness of a Stranger

2006-10-14T17:22:00.000-05:00

A few weeks ago, a complete stranger from Bluffton, Ohio heard about Taegan's situation and offered us the use of his portable hyperbaric oxygen chamber. It was Divine Intervention at its finest!

My mother, Taegan and I drove out to Bluffton (50 miles south of Toledo) and picked up the chamber with the intention of having Taegan receive 40 one hour sessions. It didn't quite work out that way, unfortunately.

After 9 treatments, I came down with a nasty upper respiratory illness and was unable to accompany Taegan into the chamber. I tried to, thinking it was just allergies, and unfortunately, blew out both my ear drums in the process.

Shawn tried, but was too tall for the chamber. Mom couldn't do it because of a sinus infection. My friend tried and Taegan wouldn't cooperate on that occasion. Shortly after that failed attempt, my friend came down with a cold as well. One of my mother's friends was able to accompany Taegan into the chamber for 2 additional treatments. Once I was on the mend, Taegan came down with a cold!!! It just seemed like a lost cause for a while! Taegan was able to receive 11 total treatments before we had to return the chamber to it's owner.

We have seen remarkable changes in Taegan after only 11 treatments in the soft shell chamber! Her high muscle tone in her left leg has decreased some, enough for her to stand flat footed occasionally. She has shown increased initiative to stand on her own and attempt steps independently! Her speech has improved dramatically as well! She babbles constantly now, and we've even heard a few 3 word sentences come from out of nowhere! Of course, we've never heard them repeated, but we did hear them!! One that she has said in the presence of one of her therapists was "I did it!" It almost brought tears to my eyes to hear her speaking like a 2 year old should.

What this experience has provided us with is HOPE. Witnessing these changes in our daughter after only 11 treatments in a SOFT SHELL chamber (which has 32% oxygen as compared to HARD SHELL chambers in a clinic, that offer 100% oxygen), we cannot wait to see the changes that will occur with Taegan after 40 treatments in a hard shell chamber!! I am so thrilled to have found the Cole Center for Healing in Cincinnati. They offer 40 treatments in a hard shell chamber for $4,400. That is so much more attainable than $10,000!!!

We tried to apply for a loan last week for that amount, but were denied. That was not a big surprise. These last 2 1/2 years without me working have taken a toll on us financially. But, I have faith that things will all work out as they should... all in divine timing.

I'd like to publicly thank Donald and Carol Augsburger of Bluffton, OH for their kindness and generosity. They donated the use of their soft shell hyperbaric oxygen chamber to Taegan for 3 1/2 weeks. Thank you for being one of Taegan's Earth Angels, and for providing us with renewed faith in the kindness of strangers. Thank you for allowing us to experience the joy of renewed hope - - that Taegan will eventually be able to live a full life, having the complete use of her legs!

The Cole Center for Healing

2006-10-06T16:29:00.000-05:00

Great news!!!

We found a hyperbaric oxygen therapy clinic in Cincinnati, Ohio that just recently opened. The best part about this clinic is that the prices are extremely reasonable!!! If you pre-pay for 40 sessions, the cost is only $4,400. I say "ONLY" because in all the research I have done over the past several months, the approximate cost for the same amount of treatments at a clinic or in a hospital is $10,000.

I have been unable to locate a clinic in Indiana. I have heard mention of plans for one to be built in the Carmel area though. As far as obtaining HBO in the hospitals here, they are hard to locate. One of Indy's largest hospitals (St. Francis) pulled their 2 HBO chambers last year. We were told that the HBO chambers were not cost effective for the hospital as a result of the multitude of changes that have recently taken place in the Medicare program.

Another wonderful thing about the Cole Center is that they have an MD on staff who evaluates each patient prior to receiving the HBO treatment, and this MD actually will prescribe the HBO treatment there at the center.

It is somewhat of a daunting task to find a physician who is willing to prescribe HBO for a cerebral palsy diagnosis. At least, in my experience, that has been the case. Taegan's pediatrician however, has been supportive and has always been willing to work with us to find Taegan the most beneficial therapies and specialists.

If anyone is interested in reading more about the clinic, their web sites are:
http://www.colecenter.com/ and http://www.cincinnatihyperbarics.com/

If anyone is interested in reading an informative article about why HBO is not more widely known and accepted by physicians as an intricate part of the healing process for a variety of dysfunction, click here: http://www.drcranton.com/hbo/widelyaccepted.htm

In the meantime, I'm hoping we can raise the $4,400 necessary for the treatments by the beginning of 2007! I'm still in the process of setting up several restaurant fund raisers... We are also organizing an ebay auction. One of the items to be auctioned off will be an original drawing from local artist Adina Francis. Watch this blog site for information on those upcoming events.

Thank you to everyone for your kindness, love, and support.
:-)

Calling All Angels....

2006-09-17T16:33:00.000-05:00

Taegan Sage McFarland was born two months early on 6-3-04, weighing 4lbs. 4oz. via emergency C-section due to a compromised umbilical cord and numerous other contributing factors.

She spent one month in the neonatal intensive care unit on a ventilator, battling pulmonary hypertension, respiratory infection, low blood pressure, patent ductus arteriosus (hole in the heart), poikilothermia (inability to maintain body temperature), apnea, reflux, and jaundice.

Since her birth, Taegan has struggled to conquer developmental milestones, and often lags behind her peers by 12-15 months. She is significantly speech delayed, having approximately five intelligible words, and uses some simple sign language for basic needs. Taegan has limited use of her legs due to increased muscle tone. She wears ankle foot orthotics (AFO's) on her legs to help with her tone issues.

We live in the small town of Greenwood, about 10 minutes south of Indianapolis. Shortly after Taegan's birth, Shawn began working two jobs in an effort to financially support our family and to keep up with the mounting medical bills. Unfortunately, in January, 2006 we lost our home in part because of the overwhelming medical bills that accrued since the latter part of my pregnancy with Taegan, and the subsequent NICU stay after her birth. We learned that despite having decent medical insurance, you can still walk away with a $30,000+ bill! Also, going from two incomes to one drastically changed things, and it simply became too much.

I was strongly advised by the NICU doctors to keep Taegan out of any type of day-care setting for as long as possible, especially up through her second year of life. This was advised because of the increased risk Taegan runs of catching a potential deadly virus (to preemies and respiratory compromised babies) called Respiratory Syncytial Virus (RSV.) Because of this risk, Taegan received monthly RSV shots at the hospital (approximately $4,500 per shot!) Thankfully, she no longer has to receive these shots, as the risk of developing serious complications from the virus goes down as her age increases.

In August, 2006 Taegan was diagnosed with Cerebral Palsy/Periventricular Leukomalacia/Spastic Diplegia. This diagnosis includes a plethora of possible ailments such as visual problems, hearing problems, seizures, learning disabilities, speech difficulties, sensory processing disorders, musculoskeletal issues and endocrinological concerns, to name a few.

Taegan has been receiving conventional therapies (Occupational, Physical, Speech, Nutritional) since the age of six months. While they play an important role in her development, there are also many non-traditional therapies which are yielding promising results. We'd like to pursue those avenues for Taegan, however, insurance companies do not cover non-traditional therapies and those that are not approved by the FDA for specific diagnoses.

Hyperbaric oxygen treatments (HBOT) are one of these non-FDA approved therapies. HBOT is approved by the FDA for use with wound care patients, however, cerebral palsy is not a recognized diagnosis for the treatment. That does not mean that we cannot pursue this avenue of treatment for our daughter. It simply means we will have to fund these treatments out of pocket. A typical cycle (40 one-hour sessions) of HBOT costs approximately $10,000 here in the United States.

Our hope for Taegan, as it is every parents hope, is for her to be able to live the fullest life possible. For her, unfortunately that also means struggling to overcome physical limitations. Limitations which very well could be lessened with HBOT. We're counting on God's magnificent earth angels (YOU!) to help us realize this hope for our daughter. Thank you for taking the time to read about our daughter and our cause.

Sincerely, Shawn, Michelle and Taegan McFarland

Angels 4 Taegan
520 North State Road 135
Suite M - 147
Greenwood, IN 46142

Regressions and Solutions

2006-09-13T14:50:00.000-05:00

In April, 2006, Taegan was progressing nicely with her Physical Therapy. In fact, she was doing so well that she was able to take about 19 steps independently wearing her leg braces! I even have a video of it! I was so excited that perhaps Taegan would be walking by her 2nd birthday.

Then, in May on Mother's Day weekend, Taegan came down with a bad head cold. It lasted about a week, and during that time, she had a 12+ month regression in her motor skills. No longer could she pull to stand, sit unassisted, tall kneel crawl, stand unassisted OR assisted! Her regression was so alarming in fact, that her pediatrician ordered an MRI be done ASAP through a neurologist. Well, it's interesting how long an "ASAP" order works in the medical world.... The MRI didn't happen until August! And by that time she already had yet ANOTHER regression from another illness.

It took 3 months for Taegan to overcome her first regression and to finally be able to function as she had been previously to catching a cold. One thing that failed to return to 'normal' was the spasticity in her left leg/foot/ankle. Spasticity basically means muscle tightness. The spasticity in her ankle is so tight that it prevents her from standing flat footed. When she tries to stand, her left foot is so tight that she is up on her tip toes, which doesn't make for good balance or functionality. The tone has increased so much so that we cannot even get her brace on that leg anymore. She also has very poor sitting posture, as her back and trunk muscles are not strong enough to allow her to sit up straight. This problem has also become worse since her illness.

Several ideas have been thrown around over recent weeks, one of those being serial casting. Serial casting is where a physician stretches out the muscle (in this case, her ankle) a little at a time, and will cast it in that position for a week at a time. This is done over a period of 4-6 weeks (from my understanding.) Each week, they cut off the cast, and stretch the ankle even further, to a higher degree/angle than it was before. The hope is that they will be able to stretch the muscle enough that it will at least return to zero (neutral... relaxed state) so that it can be functional for her.

Another idea is a night splint that has an adjustable tension hinge on it so that I can increase the stretch gradually. The problem with a splint is coming up with ways that Taegan will not be able to remove it! Also, another concern is her ability to sleep with it on... she has never been a good sleeper. In fact, she is still up 3-4 times per night... very restless sleeper. That is a common complaint among parents of children who have PVL.

Another option is surgery. Heel-cord release will be the last option. This is where they surgically go in and cut the Achilles tendon, which after done, can never be reattached etc. We are trying to do everything we can to avoid this scenario.

In August, the evening of her MRI, Taegan began running a fever. It progressed over the next day and spiked at 103.8. She was lethargic and refused to eat or drink. I worried we'd wind up back in the hospital for dehydration again, but luckily she took popsicles for me the next day. Once she was feeling better and became more active, it was apparent that she'd had another regression in skills. This time, it seemed to affect her motor planning skills more than the previous time. Her movements were very shaky and uncoordinated. She couldn't "remember" how to do simple tasks that she'd been doing for months! It is very disheartening to watch your child struggle in frustration over tasks she used to enjoy and can no longer perform.

What's worse is that we cannot seem to get an explanation for the regressions! Her neurologist's (whom we will not be returning to see) explanation was "Oh, that is just one of those things that happens sometimes." What!? I need to know WHY it's happening and WHAT is causing it to happen. Obviously it is related to illness. My question to him was, "What do I do when she's in school and catches a cold and then all of the sudden she can no longer walk or sit up? Do I have to have a wheel chair for her so that she can attend school when she has these regressions that last several months?" He shrugged that question off with " I don't think she'll have a problem with it once she's older."

It's completely frustrating to not be able to find the answers I seek. It's even more frustrating when you are not supported by your doctors or given anything to go on... no resources, no ideas, no hope!! It always amazes me how easily they can deliver news like "your child probably will not walk..." etc. etc. or the "don't expect too much, that way you will not be as disappointed." I'm currently searching for an open-minded neurologist who's willing to try non-traditional approaches for cerebral palsy.

On Sept. 12, I took Taegan to be fitted for another pair of AFO's (ankle foot orthotics) and while there, I discussed in depth with the orthotist about the possibility of obtaining a night splint. He agreed it would be a good resource to try before casting and surgery. We're checking into what percentage if any, insurance will pay etc. etc.

Hippotherapy

2006-09-08T01:25:00.000-05:00

This is Taegan enjoying a recent session of hippotherapy. Below is a description of hippotherapy and what it is geared toward, as far as working on certain skills.

Hippotherapy is a treatment that uses the multidimensional movement of the horse; from the Greek word "hippos" which means horse. Specially trained physical, occupational and speech therapists use this medical treatment for clients who have movement dysfunction. Historically, the therapeutic benefits of the horse were recognized as early as 460 BC. The use of the horse as therapy evolved throughout Europe, the United States and Canada.
Hippotherapy uses activities on the horse that are meaningful to the client. Treatment takes place in a controlled environment where graded sensory input can elicit appropriate adaptive responses from the client. Specific riding skills are not taught (as in therapeutic riding), but rather a foundation is established to improve neurological function and sensory processing. This foundation can then be generalized to a wide range of daily activities.